Bone health and FSHD

Photo credit: By Myohan at English Wikipedia, CC BY 3.0,


Muscle plays an important role in bone health, and diseases such as Duchenne muscular dystrophy have been linked to low bone mineral density (BMD), abnormal bone turnover, and increased risk of fractures. It was not known whether FSH muscular dystrophy also affects bone health, and a new study published in Muscle & Nerve begins to address this question.

This is a topic that many FSHD patients worry about, because weaker muscles lead to more falls, and fractured bones take long recovery times. Reduced mobility, in turn, can further weaken muscles. Continue reading

A Segway for mobility

by TOM THOMPSONCharlotte, North Carolina

From left, Barbara Thompson, Tom Thompson, and Beth Johnston.

The first time I ever saw a Segway I immediately recognized it as something that could possibly help my mobility. My FSHD had progressed to the point where I was having difficulty walking.

At my first opportunity I went to a Segway dealership to try one. It was an amazing machine, but I was disappointed that I couldn’t ride it very far without getting tired due to the fact that it is designed to be operated only while standing. If only it had a seat!

I began to think about how I could make a seat that I could adapt to a Segway. I tried finding a local person or company that could help me fabricate one but without any success.

One day a thought came into my head: Maybe someone already has created a seat. I googled “seat for Segway” and was surprised to find three or four different seats. After some research and phone calls, I decided to purchase a Segway and order one of the seats. Continue reading

Clinical Trial Research Network receives major award from NIH

by June Kinoshita 

Dr. Jeffrey Statland

The FSHD Clinical Trial Research Network (CTRN), which was launched last year with a $121,000 grant from the FSH Society, has received a UO1 award from the National Institutes of Health. The project will receive $469,642 for the first year. Additional funds, up to a total of nearly $2.7 million, will be released upon reaching annual milestones. The principal investigators are Rabi Tawil, MD, of the University of Rochester, and Jeffrey Statland, MD, of the University of Kansas.

“The support of the FSH Society and a private donor helped us establish the infrastructure necessary to propose such a study, and the continuing support will be essential not just for this study, but for future efforts toward creating new outcome measures, developing new therapies, and training the next generation of FSHD researchers,” said Statland. Continue reading

Ohio FSHD Family Day Conference

Strengthening our network in the Midwest

The FSHD Family Day Conference, hosted by Nationwide Children’s Hospital and the FSH Society on June 11, 2017, drew about 70 patients, families, researchers, and clinicians to Columbus, Ohio. The half-day meeting provided an opportunity for two of the nation’s leading FSHD research centers to share expertise and research advances with patients and families in the region. Patients and caregivers shared their observations and experiences of living with FSHD. Continue reading

FSH Society awards over a half million dollars for new research

The FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced this spring that it has committed $550,792 in funding to six research projects that aim to break new ground in the search for a treatment and cure for FSHD. These grants follow the Society’s record-breaking $1.36 million awarded for total research funding in 2016.

“These grants are a testament to the dedication of researchers within the FSHD community committed to understanding and solving how FSHD works through high-quality peer-reviewed research,” said Daniel Perez, president, CEO & CSO of the FSH Society. “With these grants we look to further increase our understanding of the inner workings of FSHD and build upon our success in 2016, which would not have been possible without the generosity and sustained support of donors, Society management and staff, our Board members, and volunteers.” Continue reading

FSH Society Talk Radio with Dr. Charis Himeda

Charis Himeda, PhD.

UPDATE: Our show has been rescheduled for Wednesday, August 30, 2017, 9:00 pm EST / 8:00 CST. Visit us here for updates. Listen live or via podcast HERE!

Our guest is Charis L. Himeda, PhD, Research Assistant Professor at the Center for Molecular Medicine at the University of Nevada, Reno School of Medicine. She has worked in the fields of myogenesis and muscle disease for many years, and is currently using cutting-edge technologies to examine mechanisms of epigenetic dysregulation in FSHD muscle cells and explore potential avenues of therapy.  Continue reading

Our new Physical Therapy brochure

Hot off the press, here’s our updated Physical Therapy brochure! Co-written by leading FSHD experts Katy Eichinger, PhD, Shree Pandya, PT, DPT, MS, and Wendy King, PT, the brochure provides an excellent review of the literature on PT and exercise and practical guidelines for patients and therapists. If you would like to order copies, please send your postal address to You can also download the brochure here (but it’s worth having a supply of the printed ones to share with your PT, family members, etc.).

Fourth Annual Songs in the Key of Steven Blier (PHOTOS)

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We had a wonderful Bay Area FSHD Family Day conference with speakers from Stanford, UC Davis, University of Nevada Reno, followed by a lovely gala auction and concert featuring the luminous Amanda Lynn Bottoms and Dimitri Katotakis, singing their hearts out with our beloved Steven Blier. Thank you to all who helped, supported, participated! This is how we build and strengthen our community!

Why I donated tissue

by MAUREEN EYE Centerport, New York

In November of 2016, I underwent scapula fusion surgery in Baltimore, Maryland. During that surgery I had the privilege to donate muscle tissue for FSHD research.

The donation itself was relatively simple. The paperwork prior to the surgery was minimal and mainly taken care of by the doctor’s office. The procedure itself was included as part of my overall surgery, and did not cause any further pain or loss of mobility.

Several months prior to the surgery, June Kinoshita from the FSH Society reached out to me to ask if I would be interested in donating muscle tissue taken from my surgery. It wasn’t even a question in my mind. Without hesitation I committed to donating muscle. Continue reading

Our San Francisco Concert and Patient Meeting is right around the corner!

Join us for our annual San Francisco Concert and Conference, given in memory of Joyce Hakansson.

Don’t miss our FSHD Family Day Conference and Songs in the Key of Steven Blier benefit concert on Saturday, July 15, at San Francisco’s Jewish Cultural Center. This is the Bay Area’s premier FSHD networking and advocacy event! Our conference provides an exceptional opportunity to hear from pre-eminent FSHD researchers including Peter Jones, PhD, and John Day, MD PhD, about clinical trials and cutting-edge research. There will also be a wealth of “news you can use” about physical therapy, respiratory health, FSHD care standards, orthotics, and navigating the legal and insurance systems.

Following the conference, stay on for our annual benefit concert, a magical evening showcasing the esteemed pianist and song meister Steven Blier, joined by rising stars Amanda Lynn Bottoms and Dimitri Katotakis. You will enjoy a delicious dinner and dazzling silent and live auctions, presided over by our master of ceremonies, Emmy Award winning radio & TV personality Liam Mayclem, best known as the host of EYE ON THE BAY on KPIX 5 and  as “The Foodie Chap.” 

Important deadlines:

Jewish Community Center of San Francisco

3200 California Street
San Francisco, CA 94118

Disclaimer:This is not a program of the JCCSF. The views expressed are those of the FSH Society and/or its affiliates and guests.