Fundraising gala of the FSH Society (FacioScapuloHumeral muscular dystrophy) in Los Angeles - October 2015

On October 18th, 2015, the FSH Society, see description below, is hosting a gala to fundraise for research investigating facioscapulohumeral muscular dystrophy, also known as FSHD. The funds used by the FSH Society depend largely on donations at such events, as it is a completely grassroots, non-profit organization whose sole purpose is to promote knowledge and research regarding FSHD. This gala, called “A Ghostly Gala to Vanish FSHD,” just in time for Halloween, is the FSH Society’s first major fundraising event in Los Angeles. The main goal of this event is to raise funds to further investigate FSHD. Funds raised by events like these have in the past gone to very meaningful research, including that of several French laureates.

France is among the world leaders in research regarding FSHD, and has received over half a million dollars in grant awards from the FSH Society. Below are five such grants that were funded by the FSH society since 2012 worth mentioning.

  • “Deciphering the contribution of FAT1-dependent phenotypes to FSHD symptoms and relevance for therapeutic design.” Françoise Helmbacher, PhD, IBDM, CNRS UMR 7288, Marseille, France.
  • "Gene surgery using TALEN technology: a therapy for FSHD." Julie Dumonceaux, Ph.D. Institut de Myologie, University of Paris, U974 – Inserm, Paris, France.
  • "Specific Silencing of FAT1: Role in Pathogenesis of FSHD." Angela K. Zimmermann, PhD, Centre National de la Recherche Scientifique, IBDML – Development Biology, Institute of Marseille, Campus de Luminy, Marseille, France.
  • "FAT1 Roles in Muscular Physiology and FSHD Onset." Virginie Mariot, PhD;Julie Dumonceaux, PhD; and Gillian Butler-Browne, PhD, Thérapie maladies du muscle strié, Institut de Myologie, Paris, France.
  • "Tri-dimensional Organization of the FSHD Locus During Proliferation and Differentiation of Muscle Cells in FSHD Patients and Controls." Marie Gaillard, MS, and Frederique Magdinier, PhD, INSERM UMR_S 910, Epigenetics, chromatin & diseases team, Faculté de Médecine de Marseille, France.

As mentioned above, the FSH Society’s main goal is promoting research regarding FSHD, and they have done so since its foundation in 1991. The FSH Society was founded by patients, Steve Jacobsen and Daniel Perez. Its goals also include providing education about FSHD through outreach and promoting government and industry investment in the research of FSHD. Since its foundation, the society has established a large research program by recruiting scientists and has funded more than five million dollars in research grants. In addition, they have been instrumental in the passage of the MD-CARE Act, the discovery of genetic causes of the disease, identification of future treatments, and the development of biomarkers among other aspects. Through donations from sponsors, donors, families, and patients, the FSH Society seeks to continue the progress they have made to bring more attention to FSHD, with the ultimate goal of finding the best treatments possible.

First described in 1884 by Louis Landouzy and Joseph Dejerine, two French physicians, facioscapulohumeral muscular dystrophy is a genetically inherited form of muscular dystrophy, the third most common disease involving skeletal muscles. Affecting the muscles of the upper arms, face, and scapula, FSHD has a normal life expectancy but does eventually constrict victims to a wheelchair. Symptoms are similar to other muscular dystrophy diseases in that they include shoulder, abdominal, and facial muscle weakness and hearing loss. It is present in the world in proportions of 12 in every 100,000 according to the Institut National de la Santé et de la Recherche Medicale (Inserm) in France. With this as its motivation, the FSH Society strives to better understand the disease, and with funding provided by donations at events like the one of October 18th, it can further advance its mission and be one step closer to its goal.

Last modified on 07/07/2015

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