FSH Society Annual International Research Consortium

Annually since 1994, the FSH Society has held the FSHD International Research Consortium Workshop for researchers and clinicians involved with FSHD. This meeting is one day in length and is held as a satellite meeting to the annual American Society of Human Genetics (ASHG) meeting. This meeting is the primary annual platform for clinicians, medical researchers and basic scientists to present and discuss new developments in FSHD research, reinforce collaborative efforts and facilitate new initiatives.

The meeting has three goals:

1) To discuss the genetic and biological mechanisms and patho-physiological causes of FSHD;
2) To improve diagnostic techniques and criteria for FSHD; and
3) To consider and evaluate new and existing therapies.

The workshop has an open admission for active research professionals with usually 60 to 75 attendees from the U.S., Europe, Australia and South America, including clinicians, scientists and representatives of funding organizations. The workshop has been co-chaired by distinguished scientists and patient advocates including Drs. Silvère van der Maarel and Rune Frants (both at Leiden University, the Netherlands), Dr. Kathryn Wagner (Johns Hopkins Hospital), Dr. Sara Winokur (University of California, Irvine). Dr. Rabi Tawil (University of Rochester) and Mr. Daniel Paul Perez (President & CEO of the FSH Society).

The workshop includes platform and poster presentations. Attendees are requested to submit abstracts in advance. Abstracts are scored on priority and allocated to platform or poster presentations. An abstract booklet will be available at the meeting and is sent to the attendees a week in advance. Current and previous year's program and abstract booklets can be obtained here:

2009 Watertown, Massachusetts
2008 Philadelphia, Pennsylvania
2007 San Diego, California
2006 New Orleans, Louisiana
2005 Salt lake City, Utah
2004 Toronto, Ontario, Canada
2003 Los Angeles, California

The 2009 International Research Consortium & Research Planning Meeting Were a Huge Success!

Scientists, patients, advocates, biotech and pharmaceutical companies, and clinicians from throughout the world gathered at Boston Biomedical Research Institute (BBRI) on November 9-10, 2009 to attend the FSH Society 2009 International Research Consortium and Research Planning Meetings for facioscapulohumeral muscular dystrophy (FSHD). Daniel Paul Perez, President and co-founder of the FSH Society, organized the meetings that focused on collaborating to find new treatments and cures for FSHD, which is the most common adult form of muscular dystrophy affecting 1 in 14,000. The meeting was co-hosted by Dr. Charles P. Emerson, Jr., distinguished scientist and Director of the Boston Biomedical Research Institute, and Co-Director, along with Dr. Louis Kunkel of Harvard Medical School and Children’s Hospital of the NIH Eunice Shriver Kennedy NICHD Sen. Paul D. Wellstone MD CRC for FSHD. Our scientific clinical and research co-chairs were: [clinical] Kathryn R. Wagner, M.D., Ph.D., Kennedy Krieger Institute, Baltimore, Maryland & The Johns Hopkins University School of Medicine, Baltimore, Maryland & NIH Eunice Kennedy Shriver NICHD Boston Biomedical Research Institute Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center; and, [research] Silvère van der Maarel, Ph.D., Leiden University Medical Center, Leiden, the Netherlands & Fields Center for FSHD and Neuromuscular Research.

We had 87 researchers and clinicians from institutions across the US and around the world, including Kennedy Krieger Institute, Johns Hopkins, University of Milan, University of Sydney (Australia), AcceleronPharma, Genzyme, Novartis, University of Washington, Ohio State University, University of Illinois, UMass, University of Minnesota, University de Mons-Hainaut (Belgium), INSERM - Paris, Nice, Marseille, AFM, Leiden University Medical Center (Netherlands), University of Nottingham (UK), University of Rochester, Muscular Dystrophy Association (Tucson, AZ), University of California at Irvine, Genzyme, and King’s College London (in addition to Boston Biomedical, Children’s Hospital and Harvard Medical School as well as the FSH Society), among others.

Also joining the meetings were three program directors from the NIH: Ljubisa Vitkovic, Ph.D., program director for the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), John Porter, Ph.D., program director for the National Institute of Neurodegenerative Disorders and Stroke (NINDS), and Glen Nuckolls, Ph.D., program director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

Sponsors for the event included Acceleron Pharma, Association Francaise Contre les Myopathies (AFM), Athena Diagnostics, The Fields Center at University of Rochester, FSH Society, FSHD Global Research Foundation, Genomic Vision, Genzyme, the NIH Eunice Kennedy Shriver NICHD, and Boston Biomedical Research Institute Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center.

It was a very successful workshop. And really was "the place to be" for FSHD research. The atmosphere was very positive and constructive and all in attendance felt that the mechanism of FSHD is becoming increasingly clear. Also was excellent to see that the interaction between the BBRI Wellstone MDCRC for FSHD and Fields Center for FSHD are becoming stronger, evidenced by several announcements and agreements to work jointly and corroboratively on projects. Also, excellent to see most all FSHD organizations working extremely well together side by side in the common front to solve and treat FSHD.

We thank you for your financial support of the FSH Society, Inc. and its research programs to make such significant progress possible.

Click here to view meeting organizers, hosts, and sponsors

Stay tuned for announcement of the 2010 FSH Society FSHD International Research Consortium date and location!