FSH Society Research, Fellows and Small Grants Funded

As of May 1, 2008

[ Active and ongoing project numbers are in bold letters ]

 

Bronfman Class

 

Grant:                                    FSHS-MB-001

Researcher:                         Silvere M. van der Maarel, Ph.D.

Institution:                            Leiden University Medical Center

                                                Dept. of Human Genetics

                                                Wassenaarseweg 72

                                                PO Box 9503

                                                2300 RA Leiden

                                                The Netherlands

Project Title:                        “Generation of Transgenic Mouse Models for FSHD.”

                                                $30,000                   7/1/1998 - 6/30/1999             Year 1

                                                $30,000                   7/1/1999 - 6/30/2000             Year 2

                                                $30,000                   3/31/2001 - 2/28/2002           Year 3

Goal:                                      To initiate groundbreaking research to create FSHD animal models. 

 

Grant:                                    FSHS-MB-002

Researcher:                         Sara T. Winokur, Ph.D.

Institution:                            240 D, Medical Sciences I

                                                Department of Biological Chemistry

                                                University of California

                                                Irvine, CA  92697-1700 USA

Project Title:                        “Analysis of Chromatin Structure and Skeletal Muscle-Specific Gene                                      

                                                Expression in Facioscapulohumeral Muscular Dystrophy.”

                                                $30,000                   6/1/1998 - 5/31/1999             Year 1

                                                $30,000                   6/1/1999 - 5/31/2000             Year 2

                                                $30,000                   6/1/2000 - 5/31/2001             Year 3

Goal:                                      To initiate novel research using Genechip and gene expression technologies to gain

                                                insight into FSHD.  Prior to this project, gene expression studies had never been done in   

                                                FSHD.

 

Grant:                                    FSHS-MB-003

Researcher:                         Denise Figlewicz, Ph.D.

Institution:                            University of Rochester School of Medicine

                                                Department of Neurology

                                                601 Elmwood Avenue

                                                P.O. Box 673

                                                Rochester, New York 14642 USA

Project Title:                        “Expression of genes proximal to the D4Z4 deletions:  a quantitative study in                       

                                                FSHD patients and controls. “

                                                $30,000                   1/1/1999 - 12/31/1999           Year 1

                                                $30,000                   1/1/2000 - 12/31/2000           Year 2

Goal:                                      To initiate novel research on gene expression and models to study gene expression in       

                                                FSHD. 

 

Grant:                                    FSHS-MB-004

Researcher:                         David J. Picketts, Ph.D.

Institution:                            Ottawa General Hospital    

                                                Research Institute

                                                501 Smyth Road

                                                Ottawa, Ontario, K1H 8L6

                                                Canada

Project Title:                        “Utilizing an epigenetic approach to identify the FSHD gene.”

                                                $30,000                   5/1/1999 - 4/30/2000             Year 1

                                                $30,000                   5/1/2000 - 4/30/2001             Year 2

Goal:                                      To initiate novel research on epigenetic features and hyper sensitive sites to understand  

                                                chromosomal aspects and models of gene expression on FSHD.  Prior to this project, no    

                                                work had been done internationally on elucidating the epigenetic aspects of FSHD. 

 

Grant:                                    FSHS-MB-005

Researcher:                         Davide Gabellini, Ph.D.

Institution:                            University of Massachusetts Medical Center

                                                Howard Hughes Medical Institute

                                                373 Plantation Street

                                                Worcester, MA  01605 USA

Project Title:                        “Identification and characterization of a protein interacting with the DNA                              

                                                repetitive element causally related to facioscapulohumeral muscular dystrophy.”

                                                $30,000                   1/1/2000 - 12/31/2000           Year 1

                                                $30,000                   1/1/2001 - 12/31/2001           Year 2

                                                $30,000                   1/1/2002 - 12/31/2002           Year 3

Goal:                                      To initiate novel research on gene expression/repression, disease models and to gain         

                                                insight into D4Z4 functionality and role in FSHD.  This work has led to several landmark

                                                publications on gene mis-regulation, gene silencing and repression complexes.

 

Grant:                                    FSHS-MB-006

Researcher:                         Fern Tsien, Ph.D. / Melanie Ehrlich, Ph.D.

Institution:                            Tulane Cancer Center

                                                Human Genetics/SL31

                                                Tulane Medical School

                                                1430 Tulane Avenue

                                                New Orleans, LA  70112 USA

Project Title:                        DNA Methylation and Chromatin Structure of FSHD-linked Sequences in                           

                                                FSHD Cells, Normal Cells, and Cells from Patients with the ICF Syndrome.”

                                                $35,000                   5/1/2001 - 4/30/2002             Year 1

                                                $35,000                   5/1/2002 - 4/30/2003             Year 2

Goal:                                      To initiate novel research on the role of methylation, chromatin structure and other             

                                                epigenetic features in FSHD.

 

Grant:                                    FSHS-MB-007

Researcher:                         Tonnie Rijkers, Ph.D.

Institution:                            Leiden University Medical Center

                                                Center for Human and Clinical Genetics

                                                Wassenaarseweg 72

                                                PO Box 9503

                                                2300 RA Leiden

                                                The Netherlands

Project Title:                        “Mouse models to study candidate genes and epigenetic causes of FSHD.”

                                                $30,000                   2/1/2003 – 1/31/2004            Year 1

                                                $30,000                   2/1/2004 – 1/31/2005            Year 2

Goal:                                      To initiate research on genotype/phenotype correlations in successfully created new lines               

                                                of animal models of FSHD. 

 

Grant:                                    FSHS-MB-008

Researcher:                         Cecilia Ostlund, Ph.D. / Howard Worman, Ph.D.

Institution:                            Columbia University

                                                Departments of Medicine and Anatomy and Cell Biology

                                                P & S 10-518

                                                630 W 168th St

                                                New York, NY 10032  USA

Project Title:                        “The role of DUX4 in facioscapulohumeral muscular dystrophy."

                                                $30,000                   2/1/2003 – 1/31/2004            Year 1

                                                $30,000                   2/1/2004 – 1/31/2005            Year 2

Goal:                                      To initiate research on the role of DUX4, DUX4C and to examine the role of the nuclear      

                                                envelope, nuclear lamina and nuclear organization in FSHD. 

 

Grant:                                    FSHS-MB-009

Researcher:                         Alberto Luis Rosa, M.D., Ph.D.

Institution(1):                       Washington State University -- Spokane

                                                WSU Spokane Health Science

                                                PO Box 1495

                                                Spokane, WA 99210-1495  USA

Institution(2):                       Laboratory of Neurogenetics

                                                Institute for Medical Research “Mercedes y Martín Ferreyra

                                                INIMEC-CONICET, National Research Council of Argentina     

                                                Friuli 2434,

                                                B Col. Velez Sarsfield,

                                                5016 – Córdoba,  Argentina

Project Title:                        “Role of nuclear localization signal (NLS) and H1/H2 motifs in DUX4-mediated cell              

                                                Death."

                                                $43,750                   8/1/2004 – 7/312005              Year 1

                                                $14,690                   8/1/20057/31/2006            Year 2

Goal:                                      To gain understanding on the molecular and cellular mechanism underlying the                   

                                                pathogenesis of human facioscapulohumeral muscular dystrophy (SHD).    To study          

                                                DUX4, a putative double homeobox-containing protein encoded by a 3.3 kb polymorphic

                                                tandem repeat(D4Z4), at the locus FSHD1A on the human chromosomal region 4Q35.  It    

                                                is hypothesized that abnormal temporal or spatial expression of DUX4 has a toxic effect     

                                                for muscle cells causing FSHD.  The study will help identify the mechanism(s) by which    

                                                DUX4 causes cell death.

 

Grant:                                    FSHS-MB-010

Researcher:                         Richard Lemmers, MSc., Ph.D.

Institution:                            Leiden University Medical Center

                                                Dept. of Human Genetics

                                                Wassenaarseweg 72

                                                PO Box 9503

                                                2300 RA Leiden

                                                The Netherlands

Project Title:        :               “Refinement of the FSHD critical region on 4qA chromosomes."

                                                $35,000                   6/15/20056/14/2006          Year 1

                                                $35,000                   6/15/2006 – 6/14/2007          Year 2

                                                $35,000                 2/15/2008 – 2/14/2009      Year 3

Goal:     

[Provided by applicant]:  Facioscapulohumeral muscular dystrophy (FSHD) is the third

most common myopathy with an autosomal dominant mode of inheritance. FSHD is

caused by contraction of the polymorphic D4Z4 repeat in the subtelomere of

chromosome 4q and the exact pathogenic mechanism is still unclear.  An identical and

equally polymorphic D4Z4 repeat is localized on chromosome 10, but this has never been

associated with FSHD. Our approach of detailed characterization of FSHD alleles and

translating these observations to disease mechanisms has provided robust mechanistic

insight in FSHD pathogenesis over the past years, including the mechanism of mitotic

D4Z4 instability (Lemmers et al. 2004a) and the recognition of a bi-allelic 4qter variation

(designated 4qA and 4qB) of which only the 4qA allele is associated with FSHD

(Lemmers et al. 2002). Moreover, our laboratory provided direct evidence for a

chromatin modification associated with the contraction of D4Z4 repeats by demonstrating

hypomethylation of D4Z4 in FSHD alleles (van Overveld et al. 2003).

                Through our expertise in pulsed-field gel electrophoresis (PFGE)-based FSHD

allele characterization, we have become the international reference center for FSHD

diagnosis with on average 50 referrals of atypical FSHD patients each year and

culminating in a database of>l000 patient and control genotypes  for D4Z4 alleles on

chromosomes 4 and 10.  Our PFGE-based D4Z4 examination has led to further

refinement of minimal requirement to develop FSHD in several ways including exclusion

of a region of 55 kb proximal to D4Z4 by identification of proximally extended deletions

in typical FSHD patients (Lemmers et al. 2003). Moreover, and novel to this field, our

analysis provides evidence that within an FSHD repeat, not all units are equal suggesting

that intrinsic differences between individual D4Z4 units within one array may be

important for PSEID pathogenesis (Lemmers et al. 2004a).

                In the current application I propose to further refine the minimal region

necessary and sufficient to cause FSHD in two ways. First, I will precisely characterize

three novel patients with an unusual FSHD allele. Two of these alleles carry, analogous

to proximally extended deletions, deletions of sequences distal to D4Z4. The third

pathogenic allele is highly unusual, because preliminary data suggest that it is located on

chromosome 10. The analysis of these alleles will be combined by the full

characterization of FSHD and control alleles that display repeal exchanges between

chromosome 4 and 10.  Moreover, I will focus on intrinsic sequence differences between

4qA-, 4qB and 10q-derived D4Z4 units, most notably that of the most proximal unit, as

we provided evidence for a linkage disequilibrium (LD) between this D4Z4 unit and the

distal polymorphism 4qA or 4qB (Lemmers et al. 2004a).

                I expect that this proposal will generate new and essential information on the

minimal region that is required to develop FSHD. Considering the complexity of the

disease mechanism, further refinement of these elements is essential for a better

understanding of the primary pathogenic pathway and will assist future research

strategies based on candidate gene approaches and development of appropriate cellular

and animal model systems,

 

Grant:                                    FSHS-MB-011

Researcher:                         Yi-Wen Chen, D.V.M., Ph.D.

Institution:                            Assistant Professors of Pediatrics

                                                Center for Genetic Medicine Research

                                                Children’s National Medical Center

                                                111 Michigan Avenue, N.W.

                                                Washington, D.C.  20010 USA

Project Title:                        “Molecular Mechanisms of Muscle Atrophy in facioscapulohumeral muscular dystrophy"

                                                $30,000                   1/1/2006 – 12/31/2006          Year 1

Goal:                                      [Provided by applicant]:   In preliminary studies, we studied 125 whole genome profiles

of muscle biopsies from patients with facioscapulohumeral muscular dystrophy (FSHD),

Duchenne muscular dystrophy, Juvenile dermatomyositis, dysferlin deficiency, Emery-

Dreifuss muscular dystrophy and 8 other disorders, and showed that one gene, paired-like

homeodomain transcription factor 1 (Pitx1), was significantly and specifically up-

regulated in patients with FSHD.  Meanwhile, using data from an independent human

study, we showed that the gene was up-regulated in atrophic muscles of patients with

spinal cord injury.  To identify molecular pathways regulated by Pitx1 in mature skeletal

muscles, we over-expressed Pitx1 in mouse muscles, and showed that up-regulation of

Pitx1 lead to induction of the ubiquitin-proteasome pathways, including atrogin 1 which

plays a key role in muscle atrophy.

            Based on the preliminary data, we hypothesize that transcriptional pathways

perturbed by the contraction of D4Z4 arrays lead to up-regulation of Pitx1, and induction

of atrophy pathway, which plays critical role in the patho-physiology of FSHD.  In this

application, we propose to generate and evaluate a conditional muscle-specific Pitx1

transgenic mouse as a potential animal model of human FSHD.  The data generated in the

proposed study will provide valuable findings on molecular mechanisms of muscle

atrophy in general, and a potential animal model for studying FSHD.

 

Grant:                                    FSHS-MB-012

Researcher:                         Davide Gabellini, Ph.D.

Institution:                            Howard Hughes Medical Institute

                                                Program in Gene Function and Expression

                                                University of Massachusetts Medical School

                                                Lazare Research Building - 6th Floor - Room 660 A

                                                364 Plantation Street

                                                Worcester, MA  01605 USA

Project Title:                        “Development of an Animal Model of FSHD."

                                                $37,500                   1/1/2006 – 10/31/2006          Year 1

Goal:                                      [Provided by applicant]:   Facioscapulohumeral muscular dystrophy (FSHD), the third        

                                                most common myopathy, is an autosomal dominant neuromuscular disorder characterized

                                                by progressive weakness and atrophy affecting selective skeletal muscles.  The disease    

                                                has not been linked to a classical mutation within a protein-coding gene. Instead, FSHD    

                                                patients carry deletions of tandem 3.3 kb repeats, termed D4Z4, located on chromosome    

                                                4q35.

            An incomplete knowledge of the biochemical pathogenesis of FSHD has

hampered the development of effective therapies.

            D4Z4 is a repetitive element with heterochromatic features.  Recently, we

reported that FRG1, FRG2, and ANT1, three 4q35 genes located upstream of D4Z4, are

inappropriately over-expressed, specifically in FSHD muscle. We found that an element

within D4Z4 behaves as a silencer providing a binding site for a transcriptional

repressing complex. These results suggest a model in which deletion of D4Z4 leads to the

inappropriate transcriptional de-repression of 4q35 genes, resulting in disease.

            To identify the gene(s) responsible for FSHD, we generated transgenic mice over-

expressing FRG1, FRG2 or ANT1 selectively in the skeletal.  FRG1 transgenic mice

develop a pathology with physiological, histological, ultra-structural and molecular

features analogous to those observed in FSHD patients.  These include abnormal spinal

curvature, progressive muscular dystrophy, skeletal muscle atrophy, and differential

involvement of muscle types.  Moreover, in both FSHD patients and FRG1 transgenic

mice there is no evidence for mitochondrial involvement or alteration of sarcolemmal

integrity.  This latter feature distinguishes FSHD from other muscular dystrophies in

which sarcolemmal disruption is the primary pathogenetic mechanism. By contrast, mice

over-expressing two other putative FSHD-candidate genes, FRG2 and ANT1, are normal

with regard to both phenotype and muscle histology.

            FRG1 is a nuclear protein and several lines of evidence suggest it is involved in

pre-mRNA splicing.  We found that in muscle of FRG1 mice and FSHD patients, specific

pre-mRNAs undergo aberrant alternative splicing.  Collectively, our results suggest that

FSHD results from inappropriate over-expression of FRG1 in skeletal muscle, which

leads to abnormal alternative splicing of specific pre-mRNAs.

            Here we propose a detailed study of FRG1 mice to provide novels insights into

the molecular pathogenesis of FSHD by addressing the following questions:

            1)  What is the biological role of FRG1?  The precise mechanism of action of

FRG1 is unknown.  FRG1 might bind FRG1 directly, and change splicing dynamic, or it

might regulate the activity of splicing factors.  We plan to identify FRG1 interaction

partners as a starting point for understanding its biological role.

            2)  How does FRG1 over-expression trigger muscular dystrophy?  Understanding

the role FRG1 plays in normal and diseased muscle requires methods to identify the set

of RNAs it regulates in vivo and the use of a mouse model of FSHD for RNA target

validation.  To address this aim systematically, we will undertake a genome-wide screen

to identify and validate FRG1 dependent alternatively spliced transcripts in muscle.

            These studies will provide relevant information to understand the molecular basis

of FSHD that will help in the development of effective therapeutic strategies.  FRG1

mice may be used as a preclinical model to test new therapies for FSHD.

 

Grant:                                    FSHS-MB-013

Researcher:                         Melanie Ehrlich, Ph.D.

Institution:                            Hayward Genetics/SL31

                                                Tulane Medical School

                                                1430 Tulane Avenue

                                                New Orleans, LA 70112 USA

Project Title:                        “Finding the 4q35 FSHD Gene."

                                                $35,000                7/24/2006 – 7/23/2007          Year 1

                                                $35,000                  7/24/2007 – 7/23/2008             Year 2

Goal:                     

[Provided by applicant]:  A major obstacle in research on facioscapulohumeral muscular

dystrophy (FSHD) is the uncertainty about the identity of the 4q35 gene whose activity is

directly controlled by a short D4Z4 array on the same chromosome (in cis).

Circumstantial evidence strongly indicates that inappropriate expression of this gene (the

FSHD gene) in certain skeletal muscle cells is caused by having a short D4Z4 array in its

vicinity. Apparently, the inappropriate expression of the FSHD gene causes the painful

and debilitating symptoms of FSHD by altering expression of other genes indirectly.

                 I propose to use a novel approach for screening for the FSHD gene in the 1-Mb

region proximal to the D4Z4 array on 4q. There are now well proven examples of long-

distance control of human gene expression by DNA elements that have to be on the same

chromosome as the gene they regulate (cis control). My lab will identify by computer

analysis about 100 sequences that might contain the elusive FSHD gene, including many

sequences that would not be identified by current gene search programs as potential

genes. My research group will design ~100 primer-pairs corresponding to 100-200 bp

sequences in these regions and check by in silico analysis and PCR on human-rodent

somatic cell hybrids and human DNA that these DNA primer-pairs work well in PCR and

are unique to human chromosome 4. This broad search will compensate for the major

inadequacies of available gene prediction programs and allow discovery of either a

conventional or an unconventional gene, such as a gene that encodes a regulatory RNA,

but not a protein. My lab will prepare and characterize myoblasts from FSHD and control

patients and fix these cells. They will then be analyzed by quantitative RNA polymerase

II chromatin immunoprecipitation (ChIP) assays, a DNA-based assay for engagement of

the transcription machinery on specific DNA sequences. Our lab will interpret the

resulting ChIP data and then, on FSHD and control myoblasts, my lab will do RT-PCR

analyses to test sequences that are positive for transcription in the ChIP analysis. These

RNA-based assays will be quantitative real-time RT-PCR analyses to compare FSHD and

control samples and end-point RT-PCR analyses that give another level of verification by

visualization of the size of the RT-PCR product. We will do these RNA-based assays to

verify that the regions are transcribed from myoblasts, to determine if we can detect

increased RNA amounts for one or more of these regions in FSHD vs. control myoblasts,

and to test whether candidate FSHD gene sequences are transcribed from various other

cell types, including FSHD and control fibroblasts and lymphoblastoid cell lines.

                The method that we will employ to screen for the FSHD gene is the best one for

direct identification of transcription of genes, whatever their nature. It is independent of

secondary factors that can greatly impact standard RNA analyses. These complicating

factors are RNA degradation in vitro despite the use of RNase inhibitors and RNase-free

reagents, RNA processing in vivo, and RNA stability in vivo. If the RNA polymerase II

ChIP assays indicate differential transcription of one or more 4q35 genes in a comparison

of FSHD to control myoblasts but the RNA assays do not, it could be because of one of

these complications associated with RNA analysis. In that case, we will use a different

type of ChIP assay to confirm the RNA polymerase II ChIP results, namely ChIP with an

antibody to the general transcription factor TBP and PCR primers in the region of the

putative promoter. This study holds the promise of greatly facilitating research on FSHD

by elucidating the nature of the critical gene initially impacted by a short 4q D4Z4 array

but unresponsive to a short, virtually identical D4Z4 array at 10q.

 

Grant:                                    FSHS-MB-014

Researcher:                         Patrick Reed, Ph.D.

Institution:                            Department of Physiology

                                                University of Maryland School of Medicine

                                                660 W. Redwood St.

                                                Baltimore, MD 21201 USA

Project Title:                        “Analysis of Changes in the Proteome in Facioscapulohumeral Muscular Dystrophy."

                                                $30,000                   1/24/2007 – 1/23/2008          Year 1

                                                $30,000                 2/15/2008 – 2/14/2009          Year 2

Goal:                     

[Provided by applicant]:  One of the largest hurdles to understanding the pathogenic

basis of FSHD is identifying the molecular mechanisms that trigger the onset of muscular

dystrophy. Although FSHD is linked to deletions of 3.3 kb non-coding repeats (D4Z4)

repeats near the telomere of chromosomal position 4q35, the mechanisms linking these

deletions to changes in gene expression, altered protein expression, and consequent

changes in muscle structure and function, are still poorly understood.  Many muscular

dystrophies are linked to changes in the stability of the sarcolemma of skeletal muscle. 

My previous work suggested that the sarcolemma of FSHD muscle was also affected in

ways that might lead to muscle weakness, but the proteins that were altered could not be

readily identified.   I have now adapted a proteomic approach to identify proteins that are

altered in FSHD, and to test their possible roles in pathogenicity. 

                The method I have chosen is high resolution, large format, two-dimensional

electrophoresis (2D-GE).  With the improvements I have introduced into the method, I

can now detect more than 3000 distinct protein spots in normal and FSHD muscle

samples.  Remarkably, my preliminary results indicate that very few proteins show

changes in expression levels in FSHD muscle compared to controls.  One, a spot that

showed strong expression in the soluble fraction from FSHD muscle but no detectable

expression in controls, has an isoelectric point of 5.07 and a molecular mass of

approximately 34 kDa.  I used LC/MS/MS techniques to show that this protein is mu-

crystallin (CRYM; also called “thyroid hormone binding protein" THBP). Western blots

confirmed that this protein is highly up-regulated in deltoid muscle from FSHD patients

compared to controls.  Although my analysis is still incomplete, this protein is of

considerable interest because it is expressed in the retina and is responsible for high

frequency hearing loss, both of which are compromised in patients with FSHD.

Furthermore, its role as a thyroid hormone binding protein places it at a potentially

crucial point in the regulation of myoblast cell division and differentiation, which have

recently been implicated as defective in FSHD through gene array studies. It may also be

linked to sarcolemmal and sarcomeric changes, as crystallins are likely to play important

roles in the assembly of intermediate filaments at these structures in developing muscle

Finally, the autosomal dominant nature of FSHD suggests a “gain-of-function" mutation,

consistent with the over-expression of a protein in FSHD that is expressed at much lower

levels in healthy muscle.  My novel findings therefore suggest that FSHD may be caused

by up-regulation of CRYM, with consequent changes in the structural organization and

thyroid hormone signaling pathways.

                My general aim is to test the idea that up-regulation of CRYM is an important

pathogenic mechanism that leads to FSHD.

                My specific aims are: (i) to learn if increased levels of CRYM are indeed

specific for FSHD by applying my improved methods for 2D-GE to complete my

analysis of the proteomes of FSHD and control muscle, as well as muscles from other

dystrophic samples; (ii) to use cellular transfection methods to study the biology of

CRYM in myoblasts and myotubes in culture; and (iii) to use transgenic techniques to try

to reproduce key features of FSHD in mice.  If successful, my experiments should lead to

a new understanding of the molecular mechanisms underlying FSHD, and provide an

animal model to use in developing therapies for it.       

 

Grant:                                    FSHS-MB-015

Researcher:                         Yvonne Meijer-Krom, Ph.D.

Institution:                            Leiden University Medical Center (LUMC)

                                                Department of Human Genetics

                                                Postal Zone S-4-P

                                                Einthovenweg 20; 2333 ZC Leiden

                                                PO Box 9600; 2300 RC Leiden

                                                The Netherlands

Project Title:                        “Towards the Discovery of Early Developmental Defects in FSHD.”

                                                $35,000                 1/24/2007 – 1/23/2008          Year 1

                                                $35,000                   1/24/2008 – 1/23/2009             Year 2

Goal:                     

[Provided by applicant]:   Autosomal dominant Facioscapulohumeral muscular dystrophy

(FSHD) is the third most common myopathy.  FSHD is mainly characterized by an often

asymmetric progressive weakness and wasting of the facial, shoulder and upper arm

muscles, typically starting in the second decade of life.  FSHD is caused by contraction of

the polymorphic D4Z4 repeat in the subtelomere of chromosome 4q (van Deutekom et al.

1993; Wijmenga et al. 1992).  Contraction of D4Z4 is associated with DNA

hypomethylation (van Overveld et al. 2003) and loss of a D4Z4 repressor complex

containing the polycomb protein YY1 implying a complex epigenetic disease

mechanism.

                There is strong clinical evidence that FSHD should be regarded as a congenital

disease with progressive character.  Clinical. and genetic features suggest an embryonic

involvement in FSSHD.  These include the marked asymmetry of muscle involvement,

the 1,000-fold increased occurrence of pectus excavatum unrelated to the muscle

weakness and the early onset FSHD cases with complete absence of some muscle groups

(Padberg 1982; Padberg 2004).  In addition, two interesting candidate genes, FSHD

region gene 1 (FRGI) and FRG2, located on chromosome 4, are transcriptionally

deregulated in FSHD muscle culture, but not in adult muscle.   Involvement of an early

myogenic defect in FSHD is further supported by the observation that many of the

deregulated genes in FSHD muscle are direct targets of MyoD, a key regulator of

myogenesis (Figlewicz et al. 2004; Winokur, et al. 2003).  Loss of YY1-Ezh2 has been

demonstrated to recruit MyoD, leading to the transcriptional induction of genes involved

in myogenic differentiation (Caretti et al. 2004).  Therefore, we hypothesize that an

unbalanced YY1 availability during early embryogenesis disturbs the myogenic program,

which may render specific muscle groups more susceptible to disease later in life.

                To obtain better insight in the direct targets of MyoD that are deregulated in

FSHD, we will perform a transcriptome analysis of4q-linked FSHD, phenotypic FSHD

with hypomethylation of D4Z4 and control fibroblast undergoing forced myogenesis.  To

determine their dependency on YYl, YY1 levels will he reduced during myogenesis.  In

parallel, the fusion and differentiation rate of the fibroblast cell cultures will be evaluated

to assess their morphologic characteristics.  In advantage over the assessed gene

expression profile in mature rnuscle, the current application mimics the early myogenic

program. Furthermore, the forced myogenic cell population will be much more

homogeneous compared to primary myoblast cell cultures (Bergstrom et al. 2002; Berkes

et al- 2004; Padberg 1982).  We expect this study to provide new and essential

information on the early (embryonic) component of the FSHD phenotype.

 

Grant:                                    FSHS-MB-016

Researcher:                         Darko Bosnakovski, D.V.M., Ph.D.

Institution:                            Perlingeiro lab (ND5.120)

                                                Center for Developmental Biology

                                                UT Southwestern Medical Center

                                                5323 Harry Hines Blvd.

                                                Dallas, TX 75390-9133 USA

Project Title:                        “Molecular Analyses of DUX4 and Interaction with Myogenic Regulators in FSHD.”

                                                $21,488                 12/01/2007 – 11/30/2008          Year 1

Goal:                     

 [Provided by applicant]:   The prevailing model for FSHD is that deletion of D4Z4 repeats at

4q35.2 causes local modification of heterochrornatin resulting in deregulation of nearby genes.

Which gene(s) may be directly responsible for FSHD is controversial.  In preliminary studies in

which I used an inducible gene expression system to screen FSHD candidate genes, I found

that only DUX4, a candidate located within each D4Z4 repeat, has structural and toxic effects

at a variety of expression levels in C2C12 mouse myoblasts. Furthermore, C2C12 cells induced

to express DUX4 showed striking gene expression similarities to myoblasts from FSHD patients.

Bth display deregulation of MyoD and oxidative stress related genes. In addition, I show that

DUX4 protein is expressed in cultured myoblasts from FSHD patients. We hypothesize that DUX4

plays a role in the pathogenesis or FSHD.

                The goals of this proposal are to understand the mechanism of the toxicity of DUX4

and to explore possible therapeutic interventions.  Because DUX4 is extremely toxic to myoblasts

a conditional gene expression system needs to be used to study its effects (Aim 1).  In the preliminary

study, by using a doxycycline-inducible DUX4 expression system, I found that several crucial

 myogenic genes (MyoD, Myf5) are targets of DUX4 (Aim 1).  I propose to study the underlying

 mechanism of the toxicity of DUX4 in myoblasts as well as in other cell types.  I postulate that

appropriate intervention of the deregulated genes (by over-expression or RNAi knockdown) in

DUX4 affected cells should rescue the toxic phenotype (Aim 1).  Furthermore I will test the

hypothesis that DUX4 interferes with the function of myogenic regulators by competitive binding

to the same target sites (Aim 2).  In support of this, over-expression of Pax3, a crucial gene

 in myogenesis and whose homeodomain is most similar to DUX4, renders C2C12 cells resistant to

DUX4-mediated toxicity. The aims of this proposed study target the most crucial and unknown

aspects (both mechanism and therapy) of FSHD.

                Aim 1. To understand the mechanism of action of DUX4.

                Aim 2. To test the hypothesis that DUX4 interferes with the function of myogenic regulators

                Significance

                The pathogenic mechanism of FSHD is controversial and largely unknown, which is the

major hurdle in developing a rational therapy.  Therefore it is extremely important to find the

gene(s) involved in FSHD, and to understand their action, from which therapeutic strategies

will arise.  My proposed study is designed to answer these crucial questions. Using uniform gain

of function approach, I will look closely on the effects of the FSHD candidate gene, DUX4 on

myoblast phenotype, analyze the underlying mechanism in detail (Aim 1) and identify potential

targets in the cascade of pathogenesis (Aim 2). Thus this study is directly relevant to progress

towards a therapy for FSHD.

 

Grant:                                    FSHS-MB-017

Researcher:                         Paola Picozzi, Ph.D.

Institution:                            Stem Cell Research Institute

                                                DIBIT-HSR 1B4-Room 97

                                                Via Olgettina 58

                                                20132 Milano

                                                ITALY

Project Title:                        “Functional characterization of D4Z4 in FSHD”

                                                $35,000                 3/1/2008 – 2/28/2009          Year 1

Goal:    

[Provided by applicant]:   The long-term goal of our research is to identify and characterize the

 molecular pathways that become subverted in facioscapulohumeral muscular dystrophy (FSHD)

in order to develop therapeutic strategies. FSHD, the third most common myopathy, is an

autosomal dominant neuromuscular disorder characterized by progressive weakness and

atrophy affecting selective skeletal muscles. Unlike the majority of genetic diseases, FSHD

is not caused by a classical mutation within a protein-coding gene but rather involves a

complex cascade of epigenetic events following contraction of a 3.3 kb subtelomeric non-coding

repeat (D4Z4) located on chromosome 4q35.

                At present no treatment is available for FSHD. This has been also hindered by an

incomplete knowledge of the disease pathogenesis and, until recently, by the lack of an animal

model. Based upon recent experimental results, it has been proposed that deletion of D4Z4 leads

 to the inappropriate transcriptional de-repression of the 4q35 gene FRG1 resulting in disease.

Understanding how deletion of D4Z4 causes up-regulation of 4q35 genes is important to develop

therapeutic approaches aimed at preventing transcriptional de-regulation in FSHD.

                Our specific aims are:

                1. To characterize protein/DNA interactions at D4Z4. It has been shown that a transcriptional

repressor complex composed of YY1, HMGB2 and nucleolin is associated with D4Z4 (Gabellini et al, 2002).

In mammalian cells, transcriptional repression is the result of the cooperation between sequence specific

repressors and general co-repressors such as histone deacetylases (HDACs) and DNA methylases.

Notably, the activity of YY1 is regulated at the posttranslational level, possibly through interactions

with other proteins. YY1 represses transcription by interacting with HDAC-1 and 2, and this interaction

is regulated by HDAC phosphorylation. (Galasinski et al, 2002). Collectively, these observations

suggest that other proteins may be associated with and regulate the activity of the DRC.

                2. To elucidate the mechanism underlying control of gene expression at 4q35.

Our preliminary results suggest that non-coding RNAs and microRNAs generated by D4Z4 regulate

chromatin structure and 4q35 genes expression. Our analysis will generate novel insights into the

biological role of repetitive DNA sequences in higher eukaryotes.

                The results of these studies will be very useful to identify effective therapeutic approaches for FSHD.

               

 

Delta Railroad Construction Class

 

 

Grant:                                    FSHS-DR-001

Researcher:                         Alexandra Belayew, Ph.D. / Stephane Plaisance, Ph.D.

Institution:                            Lab. Biologie Moléculaire

                                                Université de Mons-Hainaut

                                                Pentagone, avenue du Champ de Mars 6

                                                B - 7000 - Mons

                                                BELGIUM

Project Title:                        “Characterization of a protein expressed from a 3.3 kb element not linked to FSHD.”

                                                $15,000                   6/1/1998 - 12/31/1998           Year 1

                                                “Small laboratory equipment for research on FSHD." 

                                                $15,000                   2/15/2001 - open                   Year 1

Goal:                                      To initiate research on the role of DUX, DUX1, DUX4, DUX4C and to elucidate the role

                                                of DUX in FSHD and within the D4Z4 region.  

 

Grant:                                    FSHS-DR-002

Researcher:                         Rossella Tupler, M.D., Ph.D.

Institution:                            Howard Hughes Medical Institute,

                                                University of Massachusetts Medical Center,

                                                Worcester, Massachusetts 01605 USA

Project Title:                        “Characterization of differentially expressed genes in facioscapulohumeral

                                                muscular dystrophy affected muscles.”

                                                $30,000                   6/1/1998 - 5/31/1999             Year 1

Goal:                                      To initiate research into differentially expressed genes involved in FSHD.  This                    

                                                groundbreaking research has led to major advances in our understanding of FSHD.

                                               

Grant:                                    FSHS-DR-003

Researcher:                         Robert Bloch, Ph.D.

Institution:                            University of Maryland School of Medicine

                                                660 W. Redwood St.

                                                Baltimore, MD 21201 USA

Project Title:                        Sarcolemmal organization in FSHD and the MYD mouse.“

                                                $30,000                   7/1//1999 - 4/30/2001            Year 1 (interrupt/extend)

Goal:                                      To gain insight into structural aspects and patho-physiology of FSHD using the latest

                                                techniques as well as revisiting standard methodologies.  To examine the structure of

                                                FSHD muscle and the sarcolemma for insights into the disease. 

 

Grant:                                    FSHS-DR-004

Researcher:                         Jane Hewitt,  Ph.D.

Institution:                            Nottingham University

                                                Division of Genetics

                                                Queen’s Medical Centre

                                                Nottingham

                                                NG7 2UH, England

Project Title:                        Fugu rubripes as a model organism for FSHD gene identification.”

                                                $30,000                   7/1/2000 - 6/30/2001             Year 1

Goal:                                      To sequence the analogous 4q35 region in puffer fish for insight into

                                                genomic organization of FSHD.  To use data to help with mapping, assembly and

                                                finishing of the 4q35 human region.  Based on this research, we were able to assist the

                                                Human Genome Project at Washington University to complete the map and sequence this

                                                very difficult and recalcitrant region of 4q35.

 

Grant:                                    FSHS-DR-005

Researcher:                         Marcy Speer, Ph.D.

Institution:                            Duke University Medical Center

                                                Box 3445

                                                Durham, NC  27710 USA

Project Title:                        “Genetic Linkage Studies in Non-chromosome 4 FSHD.”

                                                $30,000                   2/1/2002 - 1/31/2003             Year 2     (See Year 1 under Tides)

Goal:                                      To examine and find the genetic locus of the non-chromosome 4 families through

                                                genome wide search/scan.  This project is a high priority for the research community.  It

                                                aims to register non-chromosome 4 pedigrees with the researchers and clinicians at Duke.

                                                The FSH Society plays an important role in identifying such families for this project.

 

Grant:                                    FSHS-DR-006A

Researcher:                         Emma Ciafaloni, M.D

Institution:                            University of Rochester School of Medicine

                                                Department of Neurology

                                                601 Elmwood Avenue

                                                P.O. Box 673

                                                Rochester, New York 14642 USA

Project Title:                        “The Course and Outcome of Pregnancy and Delivery in Women with FSH Muscular

                                                Dystrophy.”

                                                $13,074                   1/1/2004 - 12/31/2004           Year 1     (interrupt/extend)

                                                $1,926                     1/1/2005 - 12/31/2005           Year 2     ($12,973 total  see under Lewis)

                                                $0                            1/1/2006 - 12/31/2006           Year 3     ($13,363 total see under Lewis)

Goal:                                      Very little is known about the course and outcome of pregnancy and delivery in women    

                                                with muscular dystrophies.  Our current ability to efficiently counsel women with                

                                                muscular dystrophies when pregnant or planning a pregnancy is very limited due to the    

                                                lack of studies addressing the issue of pregnancy and delivery outcome in this group. No

                                                specific attention has been paid to the possible interaction between gestation and              

                                                progression of the myopathy.  Objectives are: to increase our knowledge about the course

                                                and outcome of pregnancy and delivery in women with FSR muscular dystrophy;  to          

                                                assess the effect of pregnancy, delivery and post-partum on the progression of muscle     

                                                weakness and muscle pain and on quality of life in women with FSH muscular dystrophy; 

                                                and, to ultimately improve counseling, family planning and obstetric management of           

                                                women with FSH muscular dystrophy

 

Grant:                                    FSHS-DR-006B Honoraria

Researcher1:                       Wendy M. King, PT

Institution1:                         Ohio State University

                                                389 McCampbell Hall

                                                1581 Dodd Drive

                                                Columbus, Ohio 43210-1205 USA

Researcher2:                       Shree Pandya, MS, PT

Institution2:                         University of Rochester School of Medicine

                                                Physical Medicine and Rehabilitation

                                                University of Rochester

                                                Rochester, NY, 14642 USA

Project Title:                        “Facioscapulohumeral muscular dystrophy Physical Therapy Booklet/Brochure and

                                                Article for Physical Therapy Journal.”

                                                $15,000                   5/1/20044/30/2005            Year 1

Goal:                                      Gather and review of literature/information related to FSHD natural history, surgical            

                                                options, orthotics, rehabilitation, physical therapy interventions, role of exercise,                

                                                hydrotherapy, pain, etc.  Review scientific literature, brochures and web sites of various    

                                                organizations from English speaking countries to assess the type and format of                   

                                                information already available.  Draft, peer-review and publish booklet/brochure on FSHD

                                                and Physical Therapy and submit journal article to Physical Therapy journal on P.T. and   

                                                FSHD.

 

Grant:                                    FSHS-DR-007

Researcher:                         Sara Winokur, Ph.D. / Ulla Bengtsson, Ph.D.

Institution:                            202 Sprague Hall
                                                Biological Chemistry
                                                University of California, Irvine
                                                Irvine, CA 92697 USA

Project Title:                        “Coding and non-coding RNA expression in FSHD.”

                                                $35,000                   7/1/20056/30/2006            Year 1

Goal:                                     

[Provided by applicant]:  More than a decade after the position effect hypothesis was first

proposed, the fundamental question of whether altered chromatin structure in FSHD

affects RNA expression at 4q35 has not be answered. Several independent laboratories

have addressed this question, yielding disparate and contradictory results. In part, this is

due to the variability in tissues and cultures utilized by various laboratories, which are

provided by different sources and often obtained and preserved using different methods.

In addition, all of the experimental techniques used to examine RNA expression thus far

have relied on pooled sources of RNA from tissues or cell cultures. These techniques

include non-quantitative RT-PCR, real-time RT-PCR, and expression profiling. These

studies assayed differential RNA expression between FSHD and control muscle, and, by

nature of the experimental design, detected average RNA levels emanating from both

alleles and multiple cell types.

                In contrast, examination of RNA expression in a single cell context is more

suited to address the question of whether an altered chromatin structure on the contracted

D4Z4 allele influences RNA expression. RNA-FISH (fluorescence in situ hybridization)

utilizes antisense RNA or dsDNA as hybridization probes to nascent nuclear RNA

transcripts followed by fluorescence detection of conjugated haptens or antibodies.

Transcription of both coding and non-coding RNAs from each of the alleles (normal and

D4Z4 contracted) can be readily identified by RNA-FISH followed by hybridization with

D4Z4 and 4q specific DNA probes. In addition, the specific cell type expressing the RNA

can be readily identified using this technique, either in culture or within tissue sections.

                We propose to utilize RNA-FISH to answer to following questions: 1) Which

4q35 genes are transcribed in proliferating myoblasts and differentiated myotubes? 2)

Are the levels of transcription different between normal and FSHD myoblasts/myotubes?

3) Is there an allele specific transcription in FSHD myoblasts/myotubes? That is, do the

contacted and normal alleles display different levels of RNA transcription within single

cells? For these studies, 3’ hyper-biotinylated antisense oligos corresponding to 4q35

genes will be used as probes for coding RNA expression in myoblasts and differentiated

myotubes.

                If chromatin structure is altered in FSHD, leading to aberrant RNA expression,

then we should not assume that such a mechanism would affect coding RNA exclusively.

Non-coding RNA has increasingly come to light as a significant player in the regulation

of both transcription and translation. Although several approaches to the detection of

non-coding RNAs exist , we propose to use the same technique (RNA-FISH) to examine

non-coding RNA within a defined region proximal to the D4Z4 repeat. Genomic clones

(cosmids) will be used to hybridize to these RNAs as the specific non-coding transcripts

cannot be identified a priori.

                Lastly, RNA transcription of genes affected in FSHD (as identified by

expression profiling) will be examined in FSHD and control myoblasts/myotubes. A

recent finding in FSHD research within the past year has been the unique and consistent

localization of the 4q telomeric region to the nuclear periphery. While the biological

significance of this localization is not yet known, the existence of nuclear domains either

permissive or repressive of transcription is well documented. Therefore, genes affected in

FSHD will be examined by RNA-FISH to determine whether co-localization with the

FSHD region at the nuclear periphery might affect RNA transcription from these genes.

 

Grant:                                    FSHS-DR-008

Researcher:                         Jane Hewitt, Ph.D.

Institution:                            Institute of Genetics

                                                Queen's Medical Centre

                                                University of Nottingham

                                                Nottingham

                                                NG7 2UH

                                                UK

Project Title:                        “Development of Genomic Resources for Functional Studies of the Mouse DUX4 Array

                                                 in Vivo.”

                                                $29,658                   7/24/2006 – 7/23/2007          Year 1

                                                $15,000                 11/1/2007 – 5/31/2008      Year 2

Goal:                                     

[Provided by applicant]:  We have recently demonstrated conservation of the open

reading frame and the tandem array organization of Dux4 homologues in a wide range of

mammalian species, suggesting a protein- encoding function for the array and a

requirement for a high copy number.  We hypothesize that the conservation of the open

reading frame and the tandem array organization of DUX4 homologues in a wide range

of mammalian species indicates a protein-encoding function for the array and a

requirement for a high copy number.  This function may be disrupted by the FSHD

deletion and hence play a role in the disease mechanism.  The identification of the mouse

homologue (Dux4) provides a model organism in which to genetically manipulate the

Dux4 array in vivo.  In the work proposed in this application we plan to generate a set of

resources that will then enable us to generate of mouse lines that either a) have reduced

repeat numbers within the Dux4 arrays or b) in which the entire Dux4 array is deleted.  In

specific aims 1 and 2 we will complete the physical and the sequence map of this locus. 

In specific aim 3, using information from this region obtained in aims 1 and 2, we will

generate gene targeting constructs using the Mutagenic Insertion and Chromosome

Engineering Resource (MICER), developed in the UK at the Sanger Genome Centre.

 

 

FSH Society, Inc. Grants (Named)

 

 

FSH Society Landsman Charitable Trust Fellowship

 

Grant:                                    FSHS-LCT-001

Researcher:                         Meredith Hanel, Ph.D.

Institution:                            Department of Cell and Developmental Biology

                                                University of Illinois at Urbana-Champaign

                                                B107 Chemical and Life Sciences Laboratory

                                                601 S. Goodwin Ave

                                                Urbana, IL 61801

                                                USA

Project Title:                        “An in vivo Xenopus System for Studying D4Z4 Mediated Chromatin and Gene Expression”

                                                $30,000                 03/01/2008 – 2/28/2009                   Year 1

Goal:    

[Provided by applicant]:     We have created a novel animal model exhibiting an FSHD

phenotype using Xenopus laevis frogs, supporting the assertion that FSHD pathology is

due to the over-expression specific genes.  This provides two therapeutic targets; 1) the misregulation

of the gene by the mutated D4Z4 array and 2) the activity of the over-expressed gene product.  This

proposal addresses the former, seeking to understand the regulation mediated by the D4Z4 array and

4q subtelomere by systematically recapitulating the human FSHD region of chromosome 4q35 in the frog. 

Introducing these human sequences, and particularly the D4Z4 repeats, under controlled circumstances

will allow us to determine the regulatory requirements lacking in the FSHD deletion.

                Xenopus transgenesis enables monitoring integrated genomic copies of engineered

sequences in a developing animal in a high through-put method. The telomeric nature of the

environment of the D4Z4 repeats will even be recapitulated in our system as we have recently

engineered telomeres in Xenopus (Wuebbles and Jones, 2007). The Xenopus genome contains many

of the same epigenetic characteristics as humans, making potential findings applicable to humans. The goal

of this proposal is to determine the cis and trans regulatory requirements for normal gene repression in the

4q35 region and how this is disrupted in FSHD.

                Our specific aims are:

                Aim 1: The impact of D4Z4 repeat number on the expression of FRG1 and neighbouring

genes.  D4Z4 repeats will be placed in cis with human and Xenopus FRG1 promoters driving the reporter GFP.

 Cis effects on gene expression will be visualized in a developing vertebrate and correlated with number

of repeats. Subsequent analysis of DNA methylation and chromatin structure will determine the

nature of repression or activation. Experiments will test the major hypotheses in the field that (1) D4Z4

repeat mediated gene repression is due to a local repressive effect of heterochromatin spreading,

(2) A repressor bound to D4Z4 repeats associates with promoters, (3) An activator associated with

the D4Z4 repeats activates transcription.

                Aim 2: Regulatory roles of the subtelomere region.  The repetitive nature of CpG rich D4Z4

repeats and their subtelomeric location suggest a structural role or maintenance of chromatin

conformation. D4Z4 repeats have been proposed as an insulator from or propagator of telomere

position effects. Since FSHD is strictly associated with the 4qA allele (containing a distal Beta satellite

repeat), but not the 4qB allele (without beta satellites) telomeric transgenes containing D4Z4 arrays

between the telomere and a reporter gene will test the influence of Beta-satellite DNA on gene

expression as well as the insulator activity of the D4Z4. The number of D4Z4 repeats required to

overcome telomeric position effect and the effect of the Beta-satellite DNA will be assayed. To

test whether D4Z4 propagate heterochromatin we will assess the ability of D4Z4 repeats to override

the effect of the Beta-globin HS4 insulators and result in gene repression.

                Aim 3: D4Z4 repeats as transcriptional regulators with genome wide effects. If D4Z4 repeats

regulate genes in trans, adding D4Z4 repeats to the Xenopus laevis genome may sequester proteins that

bind D4Z4, and may ultimately manifest as a developmental phenotype. Since Xenopus development

occurs externally, embryos at any stage of development are easily visualized and alterations in candidate

myogenic markers and vasculature will be assayed.

                Xenopus provides a unique opportunity to observe developmental stage and tissue specific

differences in epigenetic and gene regulation. Combined with the intense research by numerous groups

into pharmaceuticals targeting epigenetic regulators, elucidating the factors involved in gene regulation

by the 4q35 region may make these treatments applicable to FSHD. 

 

Grant:                                    FSHS-LCT-002

Researcher:                         Scott Q. Harper, Ph.D.

Institution:                            Center for Gene Therapy

                                                Columbus Children's Research Institute and Department of Pediatrics

                                                The Ohio State University

                                                700 Children's Drive, Room WA2015

                                                Columbus, OH  43205 USA

Project Title:                        “In Vivo Investigation of DUX4 As A Candidate FSHD Gene”

                                                $10,000                   03/01/2008 – 2/28/2009        Year 1

Goal:    

                Provided by applicant]:   Facioscapulohumeral muscular dystrophy (FSHD) is an autosomal

dominant disorder characterized by progressive and asymmetric weakness of facial, shoulder, and limb

muscles.  It is the third most common muscular dystrophy and no effective treatment exists.  FSHD is

caused by contraction of D4Z4 repeats on human chromosome 4q35.  Though the causative mutation

has been known for nearly 15 years, the underlying pathogenic mechanism for the disease remains

unresolved.  Current models suggest that normal chromatin structure at 4q35 is altered by pathogenic

D4Z4 arrays (1-10 repeats) leading to aberrant up-regulation of nearby genes.  To date, FRG1 is arguably

the best candidate FSHD candidate gene; FRG1 over-expression in mice recapitulates some dystrophic

changes associated with FSHD but the gene is not uniformly elevated in all patient biopsies.  Thus, its

uncertain role in FSHD pathogenesis justifies the search for other candidates.  Recent evidence suggests

DUX4 may play a role in FSHD development.  DUX4 is the translated product of a transcript arising from

D4Z4 which induces apoptosis of cultured myoblasts upon over-expression.  However, the in vivo effects

of DUX4 over-expression in muscle are unknown.  The goal of this project is to determine whether viral

vector-mediated DUX4 over-expression in mouse muscle causes histological changes associated with

FSHD.  This work will be an important step toward understanding the pathobiology of FSHD, which is

necessary for ultimately developing effective therapies.   

                Specific Aim:  To investigate the in vivo effects of DUX4 over-expression in muscle.  DUX4 is

candidate FSHD gene due to its chromosomal location (as a product of D4Z4 repeats) and because its over-

expression induces apoptosis in cultured myoblasts.  In vivo DUX4 over-expression in muscle is a logical

next step toward investigating its potential role in FSHD pathogenesis.  Adeno-associated viral (AAV) vectors

are ideally suited for in vivo muscle gene delivery because they efficiently transduce muscle at high levels,

produce no adverse effects on muscle histology/physiology, and allow cheap and rapid analysis compared

to transgenic mouse methods.  Here, we will use AAV serotype 8 (AAV8) vectors to deliver DUX4 or

control genes to muscles preferentially or minimally affected in FSHD.  We hypothesize that DUX4

over-expression will induce histological changes associated with muscular dystrophy in transduced animals.

 This study will be an important first step toward understanding the potential role of DUX4 in FSHD

pathogenesis and may have future implications for developing FSHD therapies.

 

 

FSH Society Tides Foundation

 

Grant:                                    FSHS-TF-001

Researcher:                         Marcy Speer, Ph.D.

Institution:                            Duke University Medical Center

                                                Box 3445

                                                Durham, NC  27710 USA

Project Title:                        “Genetic Linkage Studies in Non-chromosome 4 FSHD.”

                                                $30,000                   2/1/2001 - 1/31/2002             Year 1 (See Year 2 under Delta RR)

Goal:                                      To ensure that the work to examine and find the genetic locus of the non-chromosome 4    

                                                families continues.  This project is of very high priority to the FSH Scientific Advisory       

                                                Board.

 

 

FSH Society Vicki and Mark Ray

 

Grant:                                    FSHS-VR-001

Researcher:                         Robert Bloch, Ph.D.

Institution:                            University of Maryland School of Medicine

                                                660 W. Redwood St.

                                                Baltimore, MD 21201 USA

Project 1 Title:                    Sarcolemmal organization in FSHD and the MYD mouse.“

                                                $15,000                   5/1//2001 - 11/30/2001          Year 1

Project 2 Title:                    "To investigate the “proteome” in FSHD and to compare it to the “proteome” in                  

                                                control muscles and in other common myopathies and muscular dystrophies                        

                                                using Two-dimensional gel electrophoresis"

                                                $15,000                   2/15//2002 - 8/15/2002          Year 1

Goal:                                      To gain insight into structural aspects and patho-physiology of FSHD using the latest      

                                                techniques as well as revisiting standard methodologies.  To newly examine the structure

                                                of FSHD muscle and the sarcolemma and to examine more closely the proteins involved     

                                                in FSHD using proteomic approaches.  

 

 

FSH Society Thelma Green Memorial

 

Grant:                                    FSHS-TG-001

Researcher:                         Jeanne Lawrence, Ph.D. / Y. Polly Xing, M.D., Ph.D.

Institution:                            University of Massachusetts Medical Center

                                                55 Lake Avenue North

                                                Worcester, MA  01655 USA

Project Title:                        “Higher level chromatin packaging and nuclear organization of FSHD cell with                     

                                                an emphasis on its 3.3 kb deletion involving high resolution transcript mapping                   

                                                by mRNA in situ and direct visualization of this region of the chromosome via                     

                                                In situ hybridization with loop halo DNA preparations."

                                                $30,000                   1/1/2002 - 12/31/2002           Year 1     (interrupt/extend)

Goal:                                      To gain insight into nuclear organization, scaffolding, structure and chromatin packaging

                                                involved in FSHD.  To examine epigenetic features, nuclear compartmentalization and        

                                                aspects of D4Z4 and telomere organization.

 

 

FSH Society Sam E. and Mary F. Roberts Foundation Grant for Nutrition Research

 

Grant:                                    FSHS-SMRF-001

Researcher:                         Graham J Kemp, M.D.

Institution:                            Faculty of Medicine

                                                University of Liverpool

                                                Liverpool L69 3GA, UK

Project Title:                        “Muscle damage by reactive oxygen species, muscle atrophy and effects of creatine

                                                supplementation in facioscapulohumeral muscular dystrophy."

                                                $35,000                   1/1/2003 - 5/01/2005             Year 1.5  (interrupt/extend)

                                                                                                                                ($48,650 total see balance under Lewis)

Goal:                                      This a pilot study designed to test the following hypotheses: (1 that muscle in FSHD         

                                                shows evidence of damage by ROS in vivo;  2) that this is at least partly due to reduced    

                                                anti-ROS protection;  3) that this is ameliorated by 6 months creatine treatment; and,  4)     

                                                that this also partially alleviates muscle atrophy, even in the absence of training, and;  5)   

                                                that this results in an increase in muscle strength and clinical indices. This is an open        

                                                label pre-post protocol examining the effects of 6 months creatine supplementation in 10   

                                                patients with proven FSHD. ROS protection and damage will be studied in conchotome     

                                                biopsies of deltoid. Muscle atrophy and its effect on body composition will be measured  

                                                by whole-body quantitative magnetic resonance imaging (MRI). Muscle strength and        

                                                effects on symptomatology will be be quantified. We will compare pre-creatine results       

                                                with those of control subjects, and examine differences between post- and pre-creatine      

                                                values.

                                                This study has several possible benefits: it will contribute evidence of the therapeutic       

                                                usefulness of creatine over a longer time span than earlier studies; it will throw light on     

                                                mechanisms of muscle damage in FSHD; if ROS are indeed important then other  

                                                compounds that reduce oxidative stress in muscle may be useful; lastly, the results will     

                                                help in the design and interpretation of future placebo-control trials.

 

Grant:                                    FSHS-SMRF-002

Researcher:                         Sara Winokur, Ph.D. / Ulla Bengtsson, Ph.D.

Institution:                            202 Sprague Hall

                                                Biological Chemistry

                                                University of California, Irvine

                                                Irvine, CA 92697 USA

Project Title:                        “Restoration of normal myogenic pattern in FSHD: A nutritional approach."                         

                                                $30,000                   3/1/2003 – 2/29/2004            Year 1

                                                $30,000                   3/1/2004 – 2/28/2005            Year 2

Goal:                                      A clinically oriented project to study patterns of FSHD myogenesis in cell systems using  

                                                compounds and nutritional agents that affect methylation, oxidative stress, chromatin        

                                                structure and muscle cell differentiation.  A major goal of this project is to build an              

                                                effective model system to assay target compounds effectively.  The objective of this          

                                                study is to identify therapeutic compounds to treat FSHD that can be taken as part of a     

                                                nutritional regimen.  Nutritional compounds are selected based on functional impact on     

                                                myogenesis, availability as nutritional supplement and expediency for clinical trials.

 

Grant:                                    FSHS-SMRF-003

Researcher:                         Hermien Kan, Ph.D. / Arend Heerschap, Ph.D.

Institution:                            Head Biomedical Magnetic Resonance group

                                                Department of Radiology (667)

                                                Radboud University Nijmegen Medical Center

                                                PO Box 9101

                                                6500 HB Nijmegen

                                                The Netherlands

Project Title:                        “Assessment of the metabolic inter-muscular heterogeneity, and muscular creatine uptake

                                                and turnover in FSH patients vivo."

                                                $30,000                   8/14/2006 – 8/13/2007          Year 1

                                                $15,000                 8/13/2007 – 2/14/2008      Year 2

Goal:                                     

[Provided by applicant]: Although substantial progress has been made in the molecular

biology of facioscapulohumeral muscular dystrophy (FSHD), little is still known about its

pathophysiology such as possible defects in skeletal energy metabolism. Asymmetric

dys-functioning of muscles is a typical feature of FSHD but characteristic metabolic

profiles of the affected muscles are lacking, and objective biomarkers to assess therapies,

e.g. creatine supplementation, which possibly has beneficial effects, are not available.

MR spectroscopy (MRS) is an ideal tool to study metabolism in muscle in a non-invasive

way.

                Hypothesis. The application of MRS to FSHD patients will uncover metabolic

abnormalities that can serve as non-invasive biomarkers to assess, and better understand

the severity of disease in specific muscles.  The signals of creatine can serve as non-

invasive biomarkers to assess creatine uptake, phosphorylation and turnover in skeletal

muscle of patients in creatine supplementation treatment.

                Study objectives:

(1). To discover metabolic abnormalities in skeletal muscle of FSHD patients by MRS as

biomarkers for the severity of the disease in specific muscles.

(2).To determine if the level of Cr and PCr, by quantitative MRS is decreased in muscle

of FSHD patients

(3). To determine creatine uptake, phosphorylation and turnover in different skeletal

muscles in healthy volunteers (which is not known), and,

(4). in the muscles of FSHD patients.

                Study design will consist of two parts.

(I).  A metabolic profile of muscles will be assessed using phosphorous 31 (31P) and

tritium (1H) MRS and possible differences between affected and non-Affected skeletal

muscles will be studied (objective I).  Specifically, differences in Cr and PCr

concentrations will be monitored (objective 2). Simultaneously, Cr turnover and PCr/Cr

ratios after Cr supplementation will be studied in healthy volunteers (objective 3).

(II). Depending on the results of the volunteer studies Cr uptake, phosphorylation and

turnover will he assessed in a single location or in several skeletal muscles of FSHD

patients to meet objective 4.

                Expected results   A metabolic profile will be established to serve as non-

invasive biomarker for the severity of disease in specific muscles and to monitor therapy

in FSHD. Differences in Cr uptake and turnover between skeletal muscles in healthy

persons and FSHD will guide the optimization of Cr supplementation strategies in FSHD

patients.

 

 

FSH Society New York City Symphony and Song Benefit Concert

 

Grant:                                    FSHS-NYSS-001

Researcher:                         Daniela M. Oliveira, Ph.D.

Institution:                            Ottawa Health Research Institute

                                                501 Smyth Road

                                                Ottawa, Ontario

                                                Canada K1H 8L6

Project Title:                        Identification of the mechanism regulating the Wnt-dependent activation of muscle         

                                                progenitor cells.”

                                                $30,000                   1/1/2005 – 12/31//2005         Year 1

Goal:                                      The overall goal of the project is to identify genes regulated by the Wnt signaling              

                                                pathway that are responsible for the myogenic differentiation and proliferation of                

                                                CD45+/Sca-1+ muscle cells.  In addition muscle satellite cells, another stem cell    

                                                population within muscle (CD45+/Sca-1+ muscle cells) plays a physiological role in            

                                                muscle regeneration.  Identification of new therapeutic targets can be used to help              

                                                stimulate the Wnt-target genes that might be used to enhance stem cell transplant in          

                                                FSHD.

 

Grant:                                    FSHS-NYSS-002

Researcher:                         York Marahrens, Ph.D. / Nieves Embade, Ph.D.

Institution:                            Department of HumAn Genetics

                                                David Geffen School of Medicine

                                                University of California, Los Angeles

                                                Gonda Center, Room 4558

                                                695 Charles E. Young Drive

                                                Los Angeles, CA 90095 USA

Project Title:                        Testing whether D4Z4 Perform Long Distance Gene Silencing via the Chromosome 4        

                                                Inactivation Network.”

                                                $22,652                   11/1/200410/31/2005        Year 1

Goal:                                      A high risk and novel approach to understanding chromosome interactions, epigenetics,  

                                                To test the hypothesis that long repetitive sequence on a chromosome, regardless of         

                                                sequence, is tied into the network of long repeats responsible for chromosome                    

                                                inactivation and particular with FSHD the case of non-random mono-allelic autosomal        

                                                inactivation.   To test the hypothesis that the tract of D4Z4 repeats at 4q35 is tied into the

                                                chromosome 4 inactivation network and that D4Z4 deletions disturb chromosome 4            

                                                inactivation resulting in abnormal gene expression. 

 

 

FSH Society Research & Education Fund

 

Grant:                                    FSHS-FS-001

Researcher:                         Nieves Embade, Ph.D. / York Marahrens, Ph.D.

Institution:                            Department of Human Genetics

                                                David Geffen School of Medicine

                                                University of California, Los Angeles

                                                Gonda Center, Room 4558

                                                695 Charles E. Young Drive

                                                Los Angeles, CA 90095 USA

Project Title:                        “Tethering Adenine (Dam) Methylase to the 3.3-kb FSHD Repeats to Identify Distant        

                                                Genes that Physically Come in Contact with   the Repeats.”

                                                $30,000                   3/1/20039/30/2004            Year 1 (interrupt/extend)

Goal:                                      A high risk and novel approach to understanding chromosome interactions, epigenetics,  

                                                gene expression in FSHD and with which other parts of the chromosome(s) the FSHD        

                                                chromosome 4 D4Z4 repeats are coming into contact.  To locate the FSHD gene(s) that      

                                                interact with the D4Z4 repeats by tethering bacterial adenine methylase to sequences in    

                                                or near the 3.3 kb repeats and then identifying adenine-methylation at distant sites on the

                                                same chromosome and/or other chromosomes.

 

Grant:                                    FSHS-FS-003

Researcher:                         Sara T. Winokur, Ph.D.

Institution:                            202 Sprague Hall

                                                Biological Chemistry

                                                University of California, Irvine

                                                Irvine, CA 92697 USA

Project Title:                        “FSHD nuclear organization and RNA expression in early development.”

                                                $38,000                   1/24/2007 – 1/23/2008          Year 1

Goal:                                     

[Provided by applicant]: The precise mechanism responsible FSHD muscular dystrophy

continues to evade elucidation using current approaches to the disease.  New resources

and avenues of research are necessary to provide fresh insight and perspective into this

most challenging disease.  To this end, we propose to examine gene expression and

nuclear organization in FSHD at the earliest stages of development.  Even though typical

age of phenotypic onset in FSHD is during adolescence, there are many indications that

the disease is influenced by early developmental processes.  Resources currently utilized

for FSHD research are generated from adult tissue (skin, muscle, blood), as well as stem

cell populations within these tissues (myoblasts, lymphoblasts).  However, even these

adult stem cells are committed to specific lineages, and may well not reveal information

regarding the FSHD genome at the early in development.  We propose to investigate

FSHD region molecular and cell biology in embryonic stem cells (ESC) as a resource for

the FSHD research community.  This study will focus on FSPID region organization and

gene expression in normal development, and will provide a basis for comparison to

altered expression and localization in FSHD cells once they become available.

 

Grant:                                    FSHS-FS-004

Researcher:                         Alexandra Belayew, Ph.D.

Institution:                            Lab. Biologie Moléculaire

                                                University Academy Wallonia-Brussels

                                                Université de Mons-Hainaut

                                                Pentagone 3A, Avenue du Champ de Mars, 6

                                                B-7000 Mons

                                                BELGIUM

Project Title:                        “Study of DUX4 mRNA and Protein Expression in FSHD.”

                                                $30,000                   1/24/2007 – 1/23/2008          Year 1

Goal:                                     

[Provided by applicant]: In this research proposal, we want to focus on expression of the

DUX4 gene we mapped in each unit of the D4Z4 repeat array that is contracted in FSHD.

The gene was identified several years ago, but semostration of its expression in patient

muscles proved technically very challenging because of its low level, its toxicity, and its

homology to hundreds of DUX genes unlinked to FSHD.  We could demonstrate

expression in myoblasts and biopsies of the homologous non-toxic DUX4c protein

encoded by an isolated D4Z4 element 42 kb centromeric of the repeat array.  We have

recently beat able to develop very sensitive and specific tools and procedures to detect

DUX4 expression at the mRNA and protein level.  In our mRNA studies we detected 2

introns downstream from the D4Z4 stop codon:  their occurrence  allowed unambiguous

identification of RT-PCR products as bona fide mRNA (not genomic DNA) copies in 4

FSHD myoblast lines but not 3 controls.  We raised a monoclonal antibody against the

DUX4 carloxyl-terminal domain that specifically detects the DUX4 (52 kDa) and

homologous DUX4c (47 kDa) proteins on Western blots performed with extracts of cells

transfected with p-CI-neo-DUX expression vectors.  The Western blot sensitivity was

recently increased about 20-fold by use of a new peroxydase substrate (Pierce) and

allowed DUX4 dectection in 4 additional FSHD myoblast lines provided by Dr. D.

Figlewicz. (University of Michigan, Ann Arbor, MI) and Drs. D. Laoudj-Chenivesse and

J. Mercier (INSERM. University of Montpellier, France)

                (1) With these tools, our first aim is to evaluate DUX4 mRNA and protein

expression in additional myoblast lines and in muscle biopsies of patients with FSHD and

different D4Z4 copy numbers, or FSHD not linked to 4q365. as well as in controls and

other neuromuscular disorders.  Biopsies will be provided by Drs. D. Laoudj.Chenivesse

and J. Mercier as well as by Dr. P. Lunt (United Bristol Healthcare NHS Trust, Bristol,

UK) and Y.W. Chen (Children’s National Medical Center, Washington D.C). Primary

myoblast tines established from muscle biopsies have been provided by Dr. D. Figlewicz

and additional ones wil1 be by Drs. D. Laoudj-Chenivesse and J. Mercier.    

                (2) Our second aim is based on the observation that the DUX4 mRNA 3' ends

we detected mapped outside of the D4Z4 repeat array.  This region differs between the

chromosome 4qA allele and the 4qB one that was never found associated with FSHD.  

We want to evaluate whether such DUX4 mRNA's might also be produced from the

chromosome 4qB allele.

                In conclusion. we expect these studies to demonstrate whether there is a

correlation between DUX4 gene or protein expression and the presence of the FSHD

phenotype or not.

 

Grant:                                    FSHS-FS-005

Researcher:                         Patricia Arashiro, B.Sc., Mayana Zatz, MSc., Ph.D.

Institution:                            Universidade de São Paulo

                                                Instituto de Biociências

                                                Centro de Estudos do Genoma Humano

                                                Departamento de Genética e Biologia Evolutiva

                                                R. Matão, 277 - sala 211

                                                05508-900  São Paulo, SP

                                                Brazil

Project Title:                        “Clinical Variability in Patients Affected by Facioscapulohumeral Muscular Dystrophy (FSHD)."

                                                $15,000                   3/1/2007 – 3/1/2008              Year 1

Goal:     

[Provided by applicant]:  Previous studies from our and other groups have shown that

usually males are on average more often and more severely affected than females, with approximately

20% of patients becoming wheelchair-bound (Padberg et al, 1991; Zatz et al, 1998).

                We have previously observed in Brazilian FSHD families that asymptomatic carriers

are present in about 30% of the families and some genealogies seem to concentrate more non-

penetrant cases (Tonini et al, 2004). This observation is in accordance with van der Maarel et al (2000)

who have also observed a female predominance of mosaic asymptomatic carriers.

                A remarkable but often neglected observation in many families and populations is the

 occurrence of elderly individuals who inherit disease genes but who nevertheless remain healthy

(Nadeau, 2006). The tendency for health to persist despite the presence of susceptibility genes has

 several explanations, including modifier genes and protective alleles that confer genetic resistance

to disease (Nadeau, 2001).

                The purpose of the present proposal is to look for modifying genes or mechanisms involved

 in protecting some individuals against the deleterious effect of the FSHD deletion. Understanding this

mechanism may help us to develop new tools for prognosis of the disease and also for future treatment.

                In order to compare the gene expression in patients with discordant phenotypes we are currently

collecting muscle and skin samples from families with clinically affected and asymptomatic carriers. Total

 RNA will be isolated from muscle (biceps/ deltoid) tissue using TRIzol (Invitrogen) method and their

quality verified using gel electrophoresis and spectrophotometry. Sample handling and microarray

hybridizations will be done in collaboration with Dr. Louis Kunkel (Biological and Biomedical Science,

Harvard University). The gene expression datasets will be performed on the Affymetrix GeneChip platform.

Affymetrix MAS 5.0 software and custom software (http://db.chip.org) will be used for initial data

processing, noise analysis, and quality control. Data analysis will also be done in collaboration with

Dr. Louis Kunkel at the Children’s Hospital in Boston, Massachusetts.

                Transcript analysis offers many technical advantages over protein analysis in that the mRNA

molecules possess high affinity and specificity binding partners. Additionally, mRNA molecules exhibit

equivalent biochemical properties and can be amplified. Moreover, proteomics deal with unavoidable

problems of limited and variable sample material, sample degradation, vast dynamic range (more than 106-

fold for protein abundance alone), developmental and temporal specificity, and disease and drug

perturbations (Tyers, 2003). Other aspects that must be considered are that many signaling and regulatory

proteins are present in the cell at very low levels; only a small percentage of proteins are soluble and are

expressed at a level compatible with structural analysis (Thornton, 2001), and more than a third of all gene

products are poorly soluble membrane proteins of considerable functional importance (van Regenmortel, 2001).

                The collection of informative FSHD families, in whom we have identified symptomatic and unaffected

members (asymptomatic carriers and non-carriers) who are willing to be submitted to a muscle biopsy for

research purposes (after informed consent), is extremely difficult in practice. It has been possible due to

many years of research from our group.  In addition, the comparison of gene expression from asymptomatic

carriers and affected patients is a novel approach that might bring important results.  

 

 

FSH Society Lewis Family Research & Education Fund

 

Grant:                                    FSHS-LEWI-001

Researcher:                         Graham J Kemp, M.D.

Institution:                            Faculty of Medicine

                                                University of Liverpool

                                                Liverpool L69 3GA, UK

Project Title:                        “Muscle damage by reactive oxygen species, muscle atrophy and effects of                         

                                                creatine supplementation in facioscapulohumeral muscular dystrophy."

                                                $13,650                   1/1/2003 - 5/01/2005             Year 1.5  (interrupt/extend)

                                                                                                                                ($48,650 total see balance under Roberts)

Goal:                                      This a pilot study designed to test the following hypotheses: (1 that muscle in FSHD         

                                                shows evidence of damage by ROS in vivo;  2) that this is at least partly due to reduced    

                                                anti-ROS protection;  3) that this is ameliorated by 6 months creatine treatment; and,  4)     

                                                that this also partially alleviates muscle atrophy, even in the absence of training, and;  5)   

                                                that this results in an increase in muscle strength and clinical indices. This is an open        

                                                label pre-post protocol examining the effects of 6 months creatine supplementation in 10   

                                                patients with proven FSHD. ROS protection and damage will be studied in conchotome     

                                                biopsies of deltoid. Muscle atrophy and its effect on body composition will be measured  

                                                by whole-body quantitative magnetic resonance imaging (MRI). Muscle strength and        

                                                effects on symptomatology will be be quantified. We will compare pre-creatine results       

                                                with those of control subjects, and examine differences between post- and pre-creatine      

                                                values.

                                                This study has several possible benefits: it will contribute evidence of the therapeutic       

                                                usefulness of creatine over a longer time span than earlier studies; it will throw light on     

                                                mechanisms of muscle damage in FSHD; if ROS are indeed important then other  

                                                compounds that reduce oxidative stress in muscle may be useful; lastly, the results will     

                                                help in the design and interpretation of future placebo-control trials.

 

Grant:                                    FSHS-LEWI-002

Researcher:                         Emma Ciafaloni, M.D

Institution:                            University of Rochester School of Medicine

                                                Department of Neurology

                                                601 Elmwood Avenue

                                                P.O. Box 673

                                                Rochester, New York 14642 USA

Project Title:                        “The Course and Outcome of Pregnancy and Delivery in Women with FSH Muscular         

                                                Dystrophy.”

                                                $0                            1/1/2004 - 12/31/2004           Year 1  ($13,074 total see Delta Railroad)

                                                $11,047                   1/1/2005 - 12/31/2005           Year 2  ($12,973 total see Delta Railroad)

                                                $13,363                   1/1/2006 - 12/31/2006           Year 3

Goal:                                      Very little is known about the course and outcome of pregnancy and delivery in women    

                                                with muscular dystrophies.  Our current ability to efficiently counsel women with                

                                                muscular dystrophies when pregnant or planning a pregnancy is very limited due to the    

                                                lack of studies addressing the issue of pregnancy and delivery outcome in this group. No

                                                specific attention has been paid to the possible interaction between gestation and              

                                                progression of the myopathy.  Objectives are: to increase our knowledge about the course

                                                and outcome of pregnancy and delivery in women with FSR muscular dystrophy;  to          

                                                assess the effect of pregnancy, delivery and post-partum on the progression of muscle     

                                                weakness and muscle pain and on quality of life in women with FSH muscular dystrophy; 

                                                and, to ultimately improve counseling, family planning and obstetric management of           

                                                women with FSH muscular dystrophy

 

Grant:                                    FSHS-LEWI-003

Researcher:                         Sara Winokur, Ph.D. / Ulla Bengtsson, Ph.D.

Institution:                            202 Sprague Hall

                                                Biological Chemistry

                                                University of California, Irvine

                                                Irvine, CA 92697 USA

Project Title:                        “Coding and non-coding RNA expression in FSHD.”

                                                $30,000                   3/1/2006 - Bridge Fund        Year 1

Goal:                                     

[Provided by applicant]:  More than a decade after the position effect hypothesis was first

proposed, the fundamental question of whether altered chromatin structure in FSHD

affects RNA expression at 4q35 has not be answered. Several independent laboratories

have addressed this question, yielding disparate and contradictory results. In part, this is

due to the variability in tissues and cultures utilized by various laboratories, which are

provided by different sources and often obtained and preserved using different methods.

In addition, all of the experimental techniques used to examine RNA expression thus far

have relied on pooled sources of RNA from tissues or cell cultures. These techniques

include non-quantitative RT-PCR, real-time RT-PCR, and expression profiling. These

studies assayed differential RNA expression between FSHD and control muscle, and, by

nature of the experimental design, detected average RNA levels emanating from both

alleles and multiple cell types.

                In contrast, examination of RNA expression in a single cell context is more

suited to address the question of whether an altered chromatin structure on the contracted

D4Z4 allele influences RNA expression. RNA-FISH (fluorescence in situ hybridization)

utilizes antisense RNA or dsDNA as hybridization probes to nascent nuclear RNA

transcripts followed by fluorescence detection of conjugated haptens or antibodies.

Transcription of both coding and non-coding RNAs from each of the alleles (normal and

D4Z4 contracted) can be readily identified by RNA-FISH followed by hybridization with

D4Z4 and 4q specific DNA probes. In addition, the specific cell type expressing the RNA

can be readily identified using this technique, either in culture or within tissue sections.

                We propose to utilize RNA-FISH to answer to following questions: 1) Which

4q35 genes are transcribed in proliferating myoblasts and differentiated myotubes? 2)

Are the levels of transcription different between normal and FSHD myoblasts/myotubes?

3) Is there an allele specific transcription in FSHD myoblasts/myotubes? That is, do the

contacted and normal alleles display different levels of RNA transcription within single

cells? For these studies, 3’ hyper-biotinylated antisense oligos corresponding to 4q35

genes will be used as probes for coding RNA expression in myoblasts and differentiated

myotubes.

                If chromatin structure is altered in FSHD, leading to aberrant RNA expression,

then we should not assume that such a mechanism would affect coding RNA exclusively.

Non-coding RNA has increasingly come to light as a significant player in the regulation

of both transcription and translation. Although several approaches to the detection of

non-coding RNAs exist , we propose to use the same technique (RNA-FISH) to examine

non-coding RNA within a defined region proximal to the D4Z4 repeat. Genomic clones

(cosmids) will be used to hybridize to these RNAs as the specific non-coding transcripts

cannot be identified a priori.

                Lastly, RNA transcription of genes affected in FSHD (as identified by

expression profiling) will be examined in FSHD and control myoblasts/myotubes. A

recent finding in FSHD research within the past year has been the unique and consistent

localization of the 4q telomeric region to the nuclear periphery. While the biological

significance of this localization is not yet known, the existence of nuclear domains either

permissive or repressive of transcription is well documented. Therefore, genes affected in

FSHD will be examined by RNA-FISH to determine whether co-localization with the

FSHD region at the nuclear periphery might affect RNA transcription from these genes.

 

 

FSH Society Helen and David Younger Research Fellowship

 

Grant:                                    FSHS-HDY-001

Researcher:                         Kyoko Yokomori. Ph.D., Associate Professor

Institution:                            University of California, Irvine

                                                Department of Biological Chemistry College of Medicine,

                                                240D Med Sci I

                                                Irvine, CA 92697-1700 USA

Project Title:                       “The Molecular characterization of the chromatin structure of the D4Z4 repeat                     

                                                associated with FSHD."

                                                $30,000                   6/1/20055/31/2006            Year 1

                                                $30,000                   6/1/2006 – 5/31/2007            Year 2

                                                $30,000                 3/1/2008 – 2/28/2009        Year 3

Goal:     

[Provided by applicant]:     Facioscapulohumeral muscular dystrophy (FSHD) is an

autosomal dominant hereditary neuromuscular disorder characterized by progressive

degeneration of the upper body muscles. The majority of disease cases is linked to the

deletion of the D4Z4 repeat array in the subtelomeric region of chromosome 4q (4qter).

Since there appears to be no functional open reading frame in this region, it was

hypothesized that the D4Z4 repeat plays a structural role in governing epigenetic

regulation of gene expression critical for proper muscle cell differentiation and functions,

and that the disease is caused by the inability of the shortened D4Z4 to form its

specialized chromatin structure leading to dysregulation of critical gene expression.

However, the exact nature of this chromatin structure, factors required for the regulation,

and the target genes whose dysregulation may directly evoke disease pathogenicity

remain obscure. Therefore, it is vital to understand D4Z4 function in order to address the

etiology and pathogenesis of FSHD.

                We found using chromatin crosslinking and immunoprecipitation (ChIP)

analysis that the heterochromatin binding protein HP1, and an essential protein complex

required for chromatid cohesion termed “cohesin”, specifically bind to overlapping

regions within the D4Z4 repeat in human muscle cells. HP1 was shown to associate with

centromeric heterochromatin through interaction with the methylated lysine 9 residue of

histone H3, the hallmark of silenced chromatin, and recruit cohesin to centromeres in S.

pombe and chicken cells. Consistent with this notion, we detected H3K9 methylation in

D4Z4. Intriguingly, both HP1/cohesin binding and H3K9 methylation at this region are

lost in FSHD mutant cells, in which the 4qter D4Z4 is deleted. These results provide the

first direct evidence that 4qter D4Z4 is heterochromatic, and that this special organization

is lost in FSHD. Thus, our results provide further insight into the molecular nature and

pathogenic contribution of this unique repeat sequence in FSHD.

                We hypothesize that human HP1 targets cohesin to D4Z4, and together they

mediate proper heterochromatin structure organization required for normal D4Z4

function, which is abrogated in FSHD. To address this, we plan to carry out biochemical

and cytological analyses of the mechanism and function of cohesin and HP1 binding to

D4Z4. Specific aims are 1) analysis of HP1/cohesin binding to D4Z4 in normal and

FSHD cells, 2) characterization of the underlying mechanism and factor requirement for

HP1/cohesin binding to D4Z4, and 3) analysis of the effect of cohesin and HP1 depletion

on chromatin structure organization and function of D4Z4 at 4qter. I believe that the

proposed project will make unique contributions to further understanding of the

chromatin structure of D4Z4 and its role in the development of FSHD and may lead to

possible identification of new therapeutic targets.

 

 

FSH Society, Inc. Small Grants

 

 

Grant:                                    FSHS-SG-001

Researcher:                         Valery Kazakov, M.D., Ph.D.

Institution:                            Department of Neurology, Pavlov's Medical Institute, Lev Tolstoy str. 6/8, 197022, filial     

                                                1 St. Petersburg, Russia

Project Title:                        Travel Grant

                                                $952                        4/1997

Goal:                                      To assist with travel to the AAN/NIH/FSH Society International Research Consortium      

                                                Meeting

 

Grant:                                    FSHS-SG-002

Researcher:                         Michio Hirano, M.D.

Institution:                            College of Physicians & Surgeons of Columbia University, P&S 4-443, 630 West 168th       

                                                Street, 2nd Floor, Room 401, New York, NY 10032  USA

Project Title:                        AAN Travel Fellowship Grant

                                                $1078.87 5/1997

Goal:                                      To assist with travel to the AAN/NIH/FSH Society International ResearchConsortium       

                                                Meeting

 

Grant:                                    FSHS-SG-003

Researcher:                         David Lacomis, M.D.

Institution:                            University of Pittsburg, Pittsburg, PA

Project Title:                        AAN Travel Fellowship Grant

                                                $1333.28 5/1997

Goal:                                      To assist with travel to the AAN/NIH/FSH Society International Research Consortium      

                                                Meeting

 

Grant:                                    FSHS-SG-004

Researcher:                         William Ted Brown, M.D., Ph.D.

Institution:                            New York Institute for Basic Research, Staten Island, NY USA

Project Title:                        Travel Grant

                                                $670.80                   5/1997

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting.  For opinion, estimate and consulting on establishing FSHD genetic testing in    

                                                the United States.

 

Grant:                                    FSHS-SG-005

Researcher:                         Rossella Tupler, M.D., Ph.D.

Institution:                            Howard Hughes Medical Institute, Program in Gene Function and Expression, University

                                                of Massachusetts Medical School, Lazare Research Building - 6th Floor - Room 660 A,      

                                                364 Plantation Street, Worcester, MA  01605  USA

Project Title:                        Travel Grant

                                                $233                        10/1997

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-006

Researcher:                         Linda Surh, Ph.D.

Institution:                            Molecular Diagnostics Lab, Children's Hospital of Eastern Ontario, 401 Smyth Road,          

                                                Room 3029, Ottawa, Ontario, Canada K1H 8L1

Project Title:                        Equipment Grant

                                                $771.95                   12/1997

Goal:                                      To purchase needed equipment for pulse field gel electrophoresis required for accurate     

                                                molecular genetics testing of FSHD.

 

Grant:                                    FSHS-SG-007

Researcher:                         Meena Upadhyaya, Ph.D.

Institution:                            Institute of Medical Genetics, University of Wales, Heath Park, Cardiff, C214  4XN UK

Project Title:                        Travel Grant

                                                $1,346.14                7/1998

Goal:                                      To assist with travel to the International Muscle Conference Australia

 

Grant:                                    FSHS-SG-008

Researcher:                         Silvere van der Maarel, Ph.D.

Institution:                            Leiden University Medical Center, Dept. of Human Genetics, Wassenaarseweg 72, PO       

                                                Box 9503, 2300 RA Leiden, The Netherlands

Project Title:                        Travel Grant

                                                $845.24                   11/1998

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-009

Researcher:                         Kevin Flanigan, M.D.

Institution:      Eccles Institute of Genetics, Room 7290, University of Utah, 15 North 2030 East Street,       

                                                Lake City, Utah 84113 USA

Project Title:                        Small grant proposal for “QMA software/system and professional physical therapy            

                                                resources to help with studies to answer definitively whether anticipation in disease          

                                                severity and onset, gender effects, or parent-of origin effects exist in FSHD.”

                                                $8,375                     1/1/20009/30/2003            Year 1 (interrupt/extend)

Goal:                                      To assist with data collection in clinical trials and patient acquisition at the University of   

                                                Utah.  To help University of Utah build a registry of special FSHD families (founder            

                                                effect) in the region.

 

Grant:                                    FSHS-SG-010

Researcher:                         Yang (Ted) D. Teng, M.D., Ph.D.

Institution:                            Children's Hospital, 300 Longwood Avenue, Bader 3, Boston, MA  02115, USA

Project Title:                        Travel Grant

                                                $138.52                   6/2000

Goal:                                      To assist with travel to the NIH FSHD Symposium held at Bethesda, MD.

 

Grant:                                    FSHS-SG-011

Researcher:                         Amy Csink, Ph.D.

Institution:                            Department of Biological Sciences, Carnegie Mellon University, 4400 Fifth Avenue,            

                                                Pittsburgh, PA 15213 USA

Project Title:                        Travel Grant

                                                $840.70                   10/2000

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.  Lecture on Apoptosis.

 

Grant:                                    FSHS-SG-012

Researcher:                         Laura M. Palmucci, M.D., Ph.D.

Institution:                            Centro Malattie Neuromuscolari, Department of Neuroscience, University of Turin, via      

                                                Cherasco 15, 10126, Turin, Italy

Project Title:                        Travel Grant

                                                $395.75                   10/2000

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-013

Researcher:                         Peter Lunt, Ph.D.

Institution:                            Department Clinical Genetics, Institute of Child Health, Bristol Children's Hospital, St.        

                                                Michael's Hill, Bristol, BS2 8FG England

Project Title:                        Travel Grant

                                                $776.93                   12/2000

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-014

Researcher:                         Michel van Geel, Ph.D.

Institution:                            University Hospital Nijmegen, Department of Dermatology, Building M351, Room 26,         

                                                PO-Box 9101, 6500 HB, (Rene Descartesdreef 1, 6525 GL), Nijmegen, The Netherlands

Project Title:                        Research Publication Grant "Support for doctoral thesis printing efforts."

                                                $2,500                     7/2001

Goal:                                      To facilitate printing and dissemination of research doctoral thesis book  covering high     

                                                level and detailed work in evolutionary aspects of FSHD and including the first notion of  

                                                A/B allele in FSHD.

 

Grant:                                    FSHS-SG-015

Researcher:                         Patrick Reed, Ph.D.

Institution:                            Department of Physiology, University of Maryland School of Medicine, 660 W.                   

                                                Redwood St., Baltimore, MD 21201  USA

Project Title:                        Travel Grant

                                                $700                        7/2001

Goal:                                      To facilitate travel to the 6th World Muscle Society Congress, Thursday, 6 September         

                                                2001, Snowbird, UT to allow fellow to present recent data on FSHD.  to facilitate  

                                                thinking and research on structural and patho-physiological models for FSHD.

 

Grant:                                    FSHS-SG-016

Researcher:                         Rossella Tupler, M.D., Ph.D.

Institution:                            Howard Hughes Medical Institute, Program in Gene Function and Expression, University

                                                of Massachusetts Medical School, Lazare Research Building - 6th Floor - Room 660 A,      

                                                364 Plantation Street, Worcester, MA  01605  USA

Project Title:                        Travel Grant

                                                $677.82                   10/2001

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-017

Researcher:                         Rune R. Frants, Ph.D.

Institution:                            Human Genetics, Leiden University Medical Center, PO Box 9503, 2300 RA Leiden,             

                                                The Netherlands

Project Title:                        Travel Grant

                                                $534.23                   10/2001

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-018

Researcher:                         Richard Festenstein, Ph.D.

Institution:                            Gene Control Mechanisms and Disease, Room 5006, Clinical Research     Building, MRC     

                                                Clinical Sciences Centre, Department of Medicine, Hammersmith Hospital, Du Cane            

                                                Road, London W12 ONN England

Project Title:                        Travel Grant

                                                $1,500                     11/2001

Goal:                                      To facilitate travel to the 6th World Muscle Society Congress, Thursday, 6 September         

                                                2001, Snowbird, UT to deliver Keynote FSHD Lecture on: “Chromatin structure, gene         

                                                expression, and disease.”  To facilitate thinking and research on chromatin structure and   

                                                models for FSHD.

 

Grant:                                    FSHS-SG-019

Researcher:                         Sara T. Winokur, Ph.D.

Institution:                            240 D, Medical Sciences I, Department of Biological Chemistry, University of                       

                                                California, Irvine, CA  92697 1700 USA

Project Title:                        Small Research Grant for “FSHD-Research ListServ.”

                                                $7,000                     3//2002 – open

Goal:                                      To facilitate collaboration, sharing and biomaterials collection and distribution in the          

                                                FSHD clinical and research communities.

 

Grant:                                    FSHS-SG-020

Researcher:                         Davide Gabellini, Ph.D.

Institution:                            Howard Hughes Medical Institute, Program in Gene Function and Expression, University

                                                of Massachusetts Medical School, Lazare Research Building - 6th Floor - Room 660 A,        

                                                364 Plantation Street, Worcester, MA  01605  USA

Project Title:                        Travel Grant

                                                $508.78                   10/2002

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-021

Researcher:                         Rossella Tupler, M.D., Ph.D.

Institution:                            Howard Hughes Medical Institute, Program in Gene Function and Expression, University

                                                of Massachusetts Medical School, Lazare Research Building - 6th Floor - Room 660 A,      

                                                364 Plantation Street, Worcester, MA  01605  USA

Project Title:                        Travel Grant

                                                $678.69                   10/2002

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-022

Researcher:                         Michael R. Green, M.D., Ph.D.

Institution:                            Howard Hughes Medical Institute, Program in Molecular Medicine, University of                

                                                Massachusetts, 373 Plantation St., Suite 309, Worcester, MA  01605 USA

Project Title:                        Travel Grant

                                                $720.37                   10/2002

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-023

Researcher:                         Yukiko K. Hayashi, M.D. and Kanako Goto, Ph.D.

Institution:                            Department of Neuromuscular Research, National Institute of Neuroscience,NCNP, 4-1-1

                                                Ogawa-Higashi, Kodaira, Tokyo 187-8502, Japan

Project Title:                        FSH Society Kiichi Arahata, M.D. Memorial (KAM) International Travel Fellowship           

                                                Grant

                                                $2,761.84                10/2002

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.  To facilitate continuity of  Japanese FSHD research.

 

Grant:                                    FSHS-SG-024

Researcher:                         James Marshall, Ph.D. and Kylie DeBoer, Ph.D.

Institution:                            Sydney IVF, Level 11, O'Connel Street, Sydney NSW 2000 Australia

Project Title:                        FSH Society Kiichi Arahata, M.D. Memorial (KAM) International Travel Fellowship           

                                                Grant

                                                $2,000                     10/2003

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.  To present initial data on in vitro fertilization                   

                                                techniques for FSHD to the FSHD research community.

 

Grant:                                    FSHS-SG-025

Researcher:                         Valery Kazakov, M.D., Ph.D.

Institution:                            Department of Neurology, Pavlov's Medical Institute, Lev Tolstoy str. 6/8, 197022, filial     

                                                1 St. Petersburg, Russia

Project Title:                        Research Grant

                                                $650                        11/2003

Goal:                                      To assist with cost of DNA genotyping study of Russian FSHD samples via Dr.                  

                                                Upadhyaya in Cardiff

 

Grant:                                    FSHS-SG-026

Researcher:                         Kevin Flanigan, M.D.

Institution:                            Eccles Institute of Genetics, Room 4420, University of Utah, 15 North 2030 East Street,       

                                                Salt Lake City, Utah 84112 USA

Project Title::                       Travel Grant

                                                $854.04                   11/2003

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-027

Researcher:                         Silvere van der Maarel, Ph.D.

Institution:                            Leiden University Medical Center, Dept. of Human Genetics, Wassenaarseweg 72, PO       

                                                Box 9503, 2300 RA Leiden, The Netherlands

Project Title:                        Travel Grant

                                                $956.14                   11/2003

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-028

Researcher:                         H. Lee Sweeney

Institution:                            University of Pennsylvania, School of Medicine, B400 Richards Building, 3700                     

                                                Hamilton Walk, Philadelphia, PA 19104-6085

Project Title:                        Conference Grant

                                                $500                        12/2003

Goal:                                      Conference Support Grant for 1st "New Directions in Biology and Disease of  Skeletal        

                                                Muscle," San Diego, CA USA  January 25-27, 2004.

 

Grant:                                    FSHS-SG-029

Researcher:                         Alberto Luis Rosa, M.D., Ph.D.

Institution:                            Washington State UniversitySpokane, WSU Spokane Health Science, 310 North             

                                                Riverpoint Blvd., PO Box 1495, Spokane, WA 99210-1495 USA

Project Title:                        FSH Society Kiichi Arahata, M.D. Memorial (KAM) International Travel Fellowship           

                                                Grant

                                                $1,506.02                7/2004

Goal:                                      To assist with travel to the 7th Annual Summer School in Myology to lecture on FSHD       

                                                with J. Adoni Urtizberea, M.D. and for travel to Mons-Hainut, Belgium via rail to meet        

                                                with Alexandra Belayew, Ph.D. on DUX4 and FSHD.

 

Grant:                                    FSHS-SG-030

Researcher:                         Silvere van der Maarel, Ph.D.

Institution:                            Leiden University Medical Center, Dept. of Human Genetics, Wassenaarseweg 72, PO       

                                                Box 9503, 2300 RA Leiden, The Netherlands

Project Title:                        Travel Grant

                                                $1,184.97                11/2004

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-031

Researcher:                         George W.A.M. Padberg, M.D., Ph.D.

Institution:                            c/o  Anjali Kali, Department of Neurology, 326, UMC St Radboud, PO Box 9101, 6500          

                                                HB Nijmegen, The Netherlands

Project Title:                        Travel Grant

                                                $1,656.19                12/2004

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-032

Researcher:                         Richard Lemmers, Ph.D.

Institution:                            Leiden University Medical Center, Dept. of Human Genetics, Wassenaarseweg 72, PO       

                                                Box 9503, 2300 RA Leiden, The Netherlands

Project Title:                        Research Publication Grant

                                                $851.19                   03/2005

Goal:                                      To assist with publication, production and distribution of doctoral thesis on FSHD.

 

Grant:                                    FSHS-SG-033

Researcher:                         Petra van Overveld, Ph.D.

Institution:                            Leiden University Medisch Centrum, Dept. Urology/Endocrinology, Stafcentrum                

                                                Endocrinologie C4-R, Albinusdreef 2, 2333 ZA, Leiden, The Netherlands

Project Title:                        Research Publication Grant

                                                $851.19                   03/2005

Goal:                                      To assist with publication, production and distribution of doctoral thesis on FSHD.

 

Grant:                                    FSHS-SG-034

Researcher:                         Silvana van Koningsbruggen, Ph.D.

Institution:                            Leiden University Medical Center, Dept. of Human Genetics, Wassenaarseweg 72, PO       

                                                Box 9503, 2300 RA Leiden, The Netherlands

Project Title:                        Research Publication Grant

                                                $851.19                   03/2005

Goal:                                      To assist with publication, production and distribution of doctoral thesis on FSHD.

 

Grant:                                    FSHS-SG-035

Researcher:                         Kristen Bastress and Marcy Speer, Ph.D.

Institution:                            Duke University Medical Center, Box 3445, Durham, NC  27710  USA

Project Title:                        Research Project Grant

                                                $3,800                     04/2005

Goal:                                      To assist with travel to Leiden to research and collaborate on non chromosome 4 linked    

                                                FSHD samples with distal and proximal deletions in May 2005.

 

Grant:                                    FSHS-SG-036

Researcher:                         Meena Upadhyaya, Ph.D.

Institution:                            Institute of Medical Genetics, Cardiff University, Heath Park, Cardiff, CF14 4XN, Wales

                                                United Kingdom

Project Title:                        Travel Grant

                                                $1,383.15                10/2006

Goal:                                      To assist with travel to the Annual FSH Society International Research Consortium            

                                                Meeting as satellite to the ASHG.

 

Grant:                                    FSHS-SG-037

Researcher:                         Elly L. van der Kooi, M.D.

Institution:                            Neuromuscular Centre Nijmegen, Radboud University Nijmegen Medical Centre, PO           

                                                Box 9101, 6500 HB Nijmegen, The Netherlands

Project Title:                        Research Publication Grant

                                                $2,448.04                12/2006

Goal:                                      To assist with publication, production and distribution of doctoral thesis on FSHD.            

                                                Titled: “Facioscapulohumeral Muscular Dystrophy: interventions and intervention             

                                                studies.”

 

Grant:                                    FSHS-FSHS-SG2007

Researcher:                         Silvere van der Maarel, Ph.D.

Institution:                            Leiden University Medical Center (LUMC)

                                                Leiden, The NETHERLANDS

Project Title:                        Small Grant for Support of Prof. Dr. Silvere van der Maarel’s                                                     

                                                “Inaugural Lecture at Leiden University Medical School to raise

                                                visibility for facioscapulohumeral muscular dystrophy (FSHD) and

                                                Epigenetics 

 

Grant:                                    FSHS-FSHS-SG2007

Researcher(s):                     Alberto L. Rosa, M.D., Ph.D & E. Daniel Corona

Institution:                            INIMEC - CONICET

                                                Córdoba, ARGENTINA

Project Title:                       “2007 Kiichi Arahata, M.D. Memorial Travel Grant” for ”2007

                                                FSH Society FSHD International Research Consortium workshop

                                                at the American Society of Human Genetics in San Diego

 

Grant:                                    FSHS-FSHS-SG01-2008

Researcher:                        Alexandra Belayew, Ph.D.
Institution:                            University Academy Wallonia-Brussels
                                                University of Mons-Hainaut
                                                Mons, BELGIUM

Project Title:                        “For Services of Production of 30-50 mg of the 9A12 antibody @ 30 €/mg for DUX4/DUX4c”

Goal:                                    

                                                [Provided by applicant]:    Funds for the services of production of 30 - 50 mg of the

9A12 antibody @ 30 €/mg. 

                List of researchers who have received our 9A12 monoclonal

antibody raised against DUX4/DUX4c:

Yi Wen Chen, Washington, DC

Dalila Laoudj-Chenivesse, Montpellier, France

Michael Kyba, Dallas, Texas

Frédérique Magdinier, Lyon, France

Peter Ambros, Vienna, Austria

Sara Winokur, Irvine, California

Silvere Van der Maarel, Leiden, The Netherlands

Davide Gabellini, Milano, Italy

Stephen Tapscott, Seattle, Washington

Brian Kennedy, Seattle, Washington

Patrick Reed, Baltimore, Maryland

Meredith Hanel, Urbana-Champaign, Illinois

Harper Scott, Colombus, Ohio

Luis Garcia, Paris, France

 

Total:                   $