Thanks to the efforts of Ning Baisheng and other volunteers in China, the FSH Society’s authoritative “About FSHD” educational brochures has been translated into Chinese. It can be downloaded here. We appreciate our Chinese colleagues’ efforts to connect and support FSHD patients, clinicians, and researchers in China!
Check out this video from FSHD Stichting, the Dutch FSHD Foundation, of their spring fundraising event, a show featuring popular comedian Ronald Snijders. He had no idea what he was in for, and the result caught on video has now received over one million views!
The FSH muscular dystrophy scientific literature finally has a publication describing a genetic mouse model that develops skeletal muscle disease. This work comes via the laboratory of Michael Kyba, PhD, at the University of Minnesota’s Lillehei Heart Institute. This murine model, called iDUX4 pA, has a number of compelling similarities to the human disease. Continue reading
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 nationwide search.
“Mark brings with him a successful career in making a difference to patients and families suffering with rare diseases, as well as fine executive leadership skills in nonprofit health care and policy management,” said Lewis. “Mark will certainly help the FSH Society navigate the new challenges of translational research and entering into the business of supporting clinical trials while maintaining a solid basic research platform.” Continue reading
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.
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.
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 the FSH Society?
- New FSH Society grants
- A Segway for mobility
Download the issue here.