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FSHD: The Most Prevalent Form Of Muscular Dystrophy

OrphaNet reports on an ongoing systematic survey of literature in order to provide an estimate of the prevalence of rare diseases in Europe, which presumably could be generalized to the entire world. The current version of the report, which is continually being updated, supports anecdotal data regarding the prevalence of Facioscapulohumeral MD (FSHD) as compared to other muscular dystrophies. The current update of the report on Prevalence or reported number of published cases listed in alphabetical order of disease lists FSHD as occurring in approximately 7 out of 100,000 individuals. This is compared to 5 out of 100,000 individuals for Duchenne and Becker muscular dystrophy, formerly considered the most prevalent form of muscular dystrophy.

Occurrence Rates of
MDA-Listed Dystrophies

Duchenne & Becker
Emery-Dreifuss
Limb-Girdle
FSHD
Myotonic
Oculopharyngeal
Distal
Congenital

Research Grant Opportunity

Friends of FSH Research and the Muscular Dystrophy Association announced a $200,000 collaborative research grant "Therapeutic Targets for Facioscapulohumeral Muscular Dystrophy (or FSH)"

This groundbreaking collaboration of these two organization was made possible by Valerie A. Cwik, MD the Executive Vice President - Research & Medical Director of the MDA. The president of Friends of FSH Research, Terry Colella, stated "that I am very grateful to Dr. Cwik for her willingness to work with our organization to make this special grant possible. I feel that this is a very positive step forward for FSH research. I am pleased that the MDA will be actively promoting FSH research by utilizing their large communication network as they send a call out to researchers."

Ms. Colella further stated that this grant's aim is to "stimulate new scientific interest in FSH research. With the help of the MDA's network we have a much better opportunity to connect with scientists worldwide that may have the expertise and ideas needed to move this research forward." MDA officials reported that this grant announcement has already been sent out to more than 800 researchers and research institutions.

The generous support given to Friends of FSH Research has made it possible for them to collaborate with the MDA and provide this $200,000 two year grant opportunity, $100,000 per year for 2 years.

Proposals are being invited, under a competitive Request for Applications (RFA) process at the MDA. The grant will be awarded to the strongest project proposal which focuses on the identification, prioritization, and/or validation of molecular targets for potential therapies or cures for Facioscapulohumeral Muscular Dystrophy.

MRI Study Needs Volunteers

The University of Washington / Seattle Children's Department of Radiology is looking for both healthy subjects and individuals with FSHD ages 6-50 to take part in a magnetic resonance imaging (MRI) research study to see if MRI can be used to evaluate disease severity. for further information please see the flyer.

Tapscott Applies for NIH Grant

The initial push by Friends of FSH Research to involve The Hutch continues to pay off as shown in Dr. Stephen Tapscott's NIH grant application in collaboration with The Fields Center.

Research Funding Is Needed

You can help immediately by simply signing this petition demanding for increased NIH support for a disease that affects over 25,000 people in the U.S. alone. Every voice matters.

August 2009 Research Update

Dr. Dan Miller's lab has begun to use IPS cells to begin to form muscle precursors in order to follow FSH muscle cell development step-by-step and unravel the key differences in the regulation of gene expression. See the full update here.

2010 Genetic Alliance Annual Conference

Advancing Novel Partnerships

July 16 — 18, 2010