FSH Society Board of Directors Names Mark A. Stone as Next Chief Executive Officer

Co-founder and Former CEO Daniel Paul Perez to continue with the FSH Society as Chief Science Officer LEXINGTON, Massachusetts – William R. Lewis Sr. M.D., chairman of the Board of Directors of the FSH Society, today announced that Mark A. Stone has been named president and chief executive officer of the 501(c)(3) non-profit after a … Read more of “FSH Society Board of Directors Names Mark A. Stone as Next Chief Executive Officer” »

FSH Society awards over $600K for new research

The FSH Society has awarded grants totaling $616,467 to seven research projects submitted for the February 2017 grant cycle. This brings total research funding by the Society for 2017 to $1,167,260.  To learn more about the projects that are receiving this new support, visit Grants We have Funded.

¡El folleto “About FSHD” ya está disponible en español!

Estamos muy contentos de anunciar que About FSHD, nuestro folleto esencial para todos los pacientes, familias, proveedores de atención primaria y otros, ha sido traducido al español. Damos las gracias a Manuel Gómez y al Dr. Alberto Rosa por su generosa ayuda. El folleto está disponible en formato descargable aquí.  

Hot off the press: FSH Watch

The latest issue of FSH Watch is here! Highlights: Clinical Trial Research Network receives major NIH award World FSHD Day 2017 FSHD Family Day Conference in Columbus, Ohio Bone health and FSHD FSH Society’s congressional testimony Why I donated tissue Ask the physical therapist (part 3) How can I use a planned gift to support … Read more of “Hot off the press: FSH Watch” »

“About FSHD” brochure is now available in Chinese!

Thanks to our friend and fellow FSHD advocate in China, Ning Baisheng, our “About FSHD” brochure has been translated and adapted for readers in China. Baisheng says patients in China face the same problems as patients everywhere, as few physicians know about FSH muscular dystrophy. This brochure is a valuable educational tool not just for patients … Read more of ““About FSHD” brochure is now available in Chinese!” »

Relive Team FSHD Cycling’s Race Across America!

Check out this amazing video of Team FSHD Cycling’s epic race this summer. Huge thank you to Emily Pollock for creating this priceless documentary. Warning: Have a box of tissues handy! 

FSHD Canada awards $20K for FSH Society research grant

The FSH Society is pleased to announce that it has received a grant of $20,000 from the FSHD Canada Foundation in support of an exciting, treatment-focused project, “Developing LNA-based therapy for facioscapulohumeral muscular dystrophy.”  “We are delighted to help Neil Camarta and his colleagues at FSHD Canada help make a huge impact on FSHD by … Read more of “FSHD Canada awards $20K for FSH Society research grant” »