Category Archives: FSH Society News

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.


2015-2016YTD Donor impact report. 25 years of transformation


2015-2016ytd-donorimpactreport_coverOur 2015-2016YTD Donor Impact Report is out! We urge you to read it to appreciate the incredible impact your support has had, and will continue to have into the future. Our President and CEO reflects on the changes he has seen in his letter to our members:

I feel honored and privileged to receive this award from the FSH Society, an organization that has dedicated its entire existence to a better life for FSHD families. I feel humbled to receive this recognition, proud of my excellent team of creative scientists, and privileged to be part of this great community.

         —Silvère van der Maarel, PhD, recipient of 2016 FSH Society Pioneer Award

We are, indeed, a great community, and you should be very proud to be part of it. Begun 25 years ago, the FSH Society has grown, patient by patient, family by family, friend by friend, researcher by researcher, into a formidable force, striving every day to make a difference to all those living with the challenges and heartbreak of FSH muscular dystrophy. Continue reading

FSH Society receives its 9th 4-star Charity Navigator rating


We just received news that the FSH Society has earned its ninth consecutive 4-star Charity Navigator rating!

We’re now in the top 1% of all U.S. charities! According to Michael Thatcher, President and CEO of Charity Navigator, “Only 1% of the charities we rate have received at least 9 consecutive 4-star evaluations, indicating that FSH Society outperforms most other charities in America. This “Exceptional” designation from Charity Navigator differentiates FSH Society from its peers and demonstrates to the public it is worthy of their trust.” A 4-star Charity Navigator rating is described as “Exceeds industry standards and outperforms most charities in its Cause.” Continue reading

FSH Society honors leaders in science and advocacy

Dr. Silvere van der Maarel accepts 2017 FSH Society Pioneer as Michael Altherr looks on.

Dr. Silvere van der Maarel accepts 2017 FSH Society Pioneer as Michael Altherr looks on.

On November 11, the FSH Society honored four distinguished researchers and community members at their inaugural CureFSHD National Gala in Boston, Mass. The event, hosted by WBUR’s Morning Edition Host Bob Oakes, celebrated 25 years of progress towards finding a cure for Facioscapulohumeral Muscular Dystrophy (FSHD). The gala, which attracted more than 250 researchers, scientists, FSHD patients and supporters, was considered a great success by attendees and organizers alike. Continue reading