Category Archives: FSH Society News

Get our new Bach 2 Bowie T-shirt!

Our eye-catching T-Shirts, totes and mugs feature the Bach 2 Bowie logo from the Ghostly Gala, our annual Los Angeles-based event to raise awareness and funds to fight FSH muscular dystrophy, one of the most common hereditary muscle-weakening diseases. Just as music unites us, so does our care and concern for the health and well being of individuals and families affected by FSHD. Net proceeds support the FSH Society.

Deadline March 30. A minimum of 25 orders must be placed to trigger production. Your credit card will not be charged until then.

Order your Bach 2 Bowie items here.

Search for Chief Executive Officer

The FSH Society is seeking a committed, experienced leader to serve as Chief Executive Officer (CEO). The CEO will lead the Society in meeting its important mission: to serve as a source of information and support for all patients and families with FSHD; to act as a driving force in the development of research directed towards treatment and cure of FSHD; and to act to bring support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities.

Please review the CEO Position Announcement for further details. If you wish to apply, please send your resume and cover letter to Susan Egmont, Egmont Associates.


Barbara Chin leaves an enduring legacy

Barbara A. Chin (1945-2016)

We at the FSH Society were deeply moved and inspired to receive yesterday a magnificent bequest of $50,000 from the Barbara A. Chin Trust. This gift will enable the Society to fund work that Barbara cared deeply about: education and support for people with FSH muscular dystrophy, like herself and her late son Jimmie, and research toward treatments and a cure.

Barbara and her husband Jim, who serves on the Society’s Board of Directors, have supported the Society not only financially but through countless hours of volunteer service. Barbara changed the lives of many patients and families through her peer counseling. The entire FSHD community owes her so much. 

Barbara’s bequest helps ensure that future generations will enjoy lives free of the burdens of this disease. Individuals and families even of modest means can leave a powerful legacy by including the FSH Society in their will or estate plans. Continue reading

Consensus Reached to Move Forward with Formation of International Global FSHD Patient Registry

Newly Formed Facioscapulohumeral Muscular Dystrophy Consortium Aims to Consolidate More than 13 Patient Registries in Effort to Accelerate Research on Rare Disease

BOSTON – (February 22, 2017) – Today the FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced that with the FSHD Champions, an international alliance of FSHD patient advocacy organizations, a consensus has been reached to move forward with the vision of an international global FSHD patient registry. The goals of the registry will be to accelerate research to understand and treat FSHD, and empower patients to gain insights from the data about their condition and improve their health and quality of life. Continue reading

Donated patient tissue is helping to advance research

First report from the FSH Society’s tissue donation registry

by Kelly Jackson, Fulcrum Therapeutics, Cambridge, Massachusetts

At Fulcrum Therapeutics, human tissue serves as one of the most basic yet essential tools available to help in efforts to develop new medicines to treat FSHD and other genetic diseases.

Human biospecimens have long served as a foundation for the development of precision medicines. By deeply analyzing human tissue at the cellular level, researchers gain indispensable insights into how a disease progresses, which may open the door to new treatment strategies. These insights also enable the development of personalized molecular tools that are used to evaluate the safety and efficacy of novel therapeutics as they move through human clinical trials. Continue reading

New Source for FSH Muscular Dystrophy Family Cell Lines

Cell Lines to be made available through the NIGMS Human Genetic Cell Repository, sponsored by the National Institute of General Medical Sciences at Coriell Institute for Medical Research

(From PRWeb) The FSH Society, the Massachusetts-based non-profit and global leader in the quest to understand and treat facioscapulohumeral muscular dystrophy (FSHD), today announced the publication of an important collection of cell lines from individuals with FSHD that will soon be available through the NIGMS Human Genetic Cell Repository at Coriell Institute for Medical Research. Comprised of cell lines from 114 patients representing 12 multigenerational FSHD families, this collection is an invaluable new resource for scientists seeking to understand and develop treatments for one of the most common forms of muscular dystrophy. Continue reading

Download our medical alert card

If you ever find yourself in the emergency room, you want your medical care team to know about your status as a person with FSH muscular dystrophy. Our medical alert card, which provides essential information for emergency responders, is available for you to download, cut out, fold and carry in your wallet. Just click here: FSH Society Medical Alert card.

Global FSHD Registry Workshop

Participants at the ENMC workshop of FSHD registries

Participants at the ENMC workshop of FSHD registries

International workshop in November reaches consensus on a global FSHD patient registry. 

If you are an individual with FSHD, or a family member, you may have been asked to join a patient registry. Perhaps you are wondering what a registry is?

Disease registries are an essential tool for advancing research to understand a disease, improve patient care, and develop treatments. Typically, registries collect patient contact information, and demographic and diagnosis data. In addition, registries may collect varying amounts of data about your health and symptoms. The data will be anonymized and accessible only by authorized individuals, to protect the privacy of patients and families who participate. Continue reading

Participate in our survey on the impact of FSH muscular dystrophy

We are excited to share with you a survey containing questions to help researchers better understand the impact of FSHD on patients and caregivers.  The survey was developed collaboratively by Acceleron Pharma, aTyr Pharma, the FSH Society, and Jeffrey Statland, MD PhD. Topics include the use of assistive devices, exercise, specific muscle weaknesses, and willingness to participate in various types of clinical trials among others.  These responses will be used to help advance the field and inform the design of clinical studies for new therapies.  

Upon close, the survey data will be compiled and analyzed for insights.  The results will then be summarized into a publication which will be shared by the FSH Society for all to read.  The survey should take approximately 15 minutes.  This is an exciting opportunity to have your voice heard and make a difference in the FSHD community! Thank you for taking the time to help.