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
Dr. Michael Kyba (right) is among the recipients of an FSH Society grant.
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.
The FSHD Champions, an international alliance of organizations that fund and advocate for FSHD research, will have its annual meeting immediately following the FSH Society’s 2015 International Research Consortium workshop. The leadership of these organizations will meet to discuss global collaborative initiatives to accelerate FSHD research, awareness and funding. For more information, click here.
Check out Greg Block’s post at the Friends of FSH Research website about the FSH Society’s FSHD International Research Consortium meeting: “Extracting the Big Picture from the 2014 International FSHD Meeting.”
The science we do now as a community is being adopted around the globe. Our experiments need to be creative, and the data need to be robust, reproducible, and right (the 3 R’s). The tools we develop need to be accessible and sharable. Efforts carried out by independent labs need to be complementary to the forward trajectory of the research landscape, and the need for open collaboration is greater than it’s ever been.
The FSHD Champions will be attending the 2014 American Society for Human Genetics annual meeting in San Diego, California, October 19-21. We will be at exhibit booth #1818. Come visit us! We will be happy to answer your questions about FSHD research and funding programs from our member organizations.