Tag Archives: FSH

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.


Looking Back on A Year Full of Strength, Part 2


As we continue to look back on the incredible year we have had, we want to recognize others who have shared their inspirational stories, strength and commitment to continue to do the things that they love. As we mentioned in our first post, throughout the remainder of 2016, we will be sharing these stories from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.

Your support is life-changing to those in the Society and with your continued dedication to finding a cure, we know that this challenge is possible. Continue reading below to hear more from Kristen, Tom, and Zabrisa on how they are raising awareness, doing what they love and how the Society has helped them along the way!

Continue reading

The FSH Society Issues Six Research Grants

Today, the FSH Society announced that it has awarded six grants totaling more $609,525 to new research projects. Through these studies, the FSH Society’s fellowship program aims to gain insights and achieve significant milestones into the research of FSHD, one of the most prevalent types of muscular dystrophy.

Research grants most recently awarded by the FSH Society include:  Continue reading

GE Chairman’s Award Benefits FSH Muscular Dystrophy Research

From PRWeb

The $25,000 award to the Massachusetts-based FSH Society will fund scientific research grants focused on discovering and developing treatments for facioscapulohumeral muscular dystrophy.

Lexington, MASS. (PRWEB) March 03, 2014. When GE Aviation’s Vice President Mohammad Ehteshami was told that he had received the prestigious GE Chairman’s Award, he asked that the $25,000 be donated to the FSH Society, a Massachusetts-based charitable foundation that has transformed the science of a little-known disease, facioscapulohumeral muscular dystrophy (FSHD).

“FSHD has impacted someone very dear to me, and I therefore wanted to do my part in helping to fund the research for finding a cure,” Ehtashami told the FSH Society. Continue reading

First FSH Muscular Dystrophy High-Throughput Drug Discovery Study Published

From PRWeb press release, February 6, 2014.

In research funded by the FSH Society, a patient advocacy organization, a Minnesota team has identified drugs that block the toxic effects of a gene involved in a most common form of muscular dystrophy.

Facioscapulohumeral muscular dystrophy (FSHD) is among the most common muscle-wasting diseases, affecting more than 500,000 people around the world. Its cause is genetic, passed from generation to generation, although 30 percent of cases arise spontaneously in families with no previous history. There is no treatment, but in a new study published in the journal, Skeletal Muscle on February 1, 2014, researchers have identified dozens of compounds showing early promise for future treatments. Continue reading

FSH Watch Winter 2014


Highlights include:

  • Report from the 2013 International Research Consortium meeting in Cambridge, Massachusetts. Advances in basic research, clinical trials and future drug targets.
  • Introducing our new Celebrity Honorary Board. Stars from film, TV, music and sports sign on to help raise awareness.
  • University of Massachusetts Medical School opens new FSHD research center and clinic.
  • Photos and stories from the Celebrity Walk ‘n’ Roll, New York City benefit concert, fundraisers in Atlanta and golf tournaments from Toronto and Abilene.

And much more! Read or download the full 2014 Winter Watch here.

Human Muscle Growing in Mice Provides a New Research Tool for FSHD

MouseXenograftPhotoLexington, Mass. (PRWEB) January 24, 2014. As published online today in Human Molecular Genetics, support from the FSH Society, a patient-driven nonprofit, has enabled people with facioscapulohumeral muscular dystrophy (FSHD) to donate muscle tissue, which scientists have succeeded in grafting into mice, providing a new tool for conquering this devastating muscle-wasting disease. Among the most common forms of muscular dystrophy, FSHD affects an estimated 500,000 people around the world.

Since the discovery of FSHD’s genetic mechanism in 2010, scientists have been forging ahead to find drugs and genetic therapies that could block this mechanism. But there remain major obstacles in the path to a treatment. One of the most significant roadblocks is the lack of a preclinical research model that can be used to study the disease in depth and to evaluate new therapies. Continue reading

Adveq Provides FSH Society Generous Gift After Witnessing Employee’s Journey

Mother’s struggle with FSH inspires company to make a charitable donation this holiday season.

(PRWEB) January 14, 2014

AngelaFarkas&GirlsOver the holidays, we received a generous $10,000 donation from Adveq, a leading asset manager investing in private equity and real asset funds globally. FSH Society was provided this gift after Adveq witnessed the courage of one of their employees, Angela Farkas, in sharing her story and her struggle with FSHD. We want to share her story with you, too:

Angela Farkas was raised in New York’s Rockland County by two deaf parents. A successful businesswoman and mother of two – Vanessa, five and Alyssa, eight – she currently works in Adveq’s New York City office and lives in Westchester, New York with her husband.

When Alyssa was born in 2005, she failed the infant hearing screening. Continue reading

FSH Watch Annual Research Report 2013

FSHWatch-SummerFall2013Our annual review of scientific research funded by the FSH Society has just been published in the Summer/Fall 2013 issue of the FSH Watch newsletter. The issue includes a list of the top papers from the past year with comments about their significance, opportunities for research volunteers, and the latest Society news. The full issue is available here to read and download (pdf).