FSHD Advocate is out!

The latest issue of our flagship magazine, FSHD Advocate, has left the printers and will be landing soon in your mailbox. To get an advance look, or if you’re a digital-only reader, here is the full issue online. Highlights include: Special section on the Therapeutics Accelerator project, what it is and what we are doing … Read more of “FSHD Advocate is out!” »

The latest issue of the Watch is here

Click Here to read all the recent research and community updates! Highlights of this issue include:  Reports from the International Research Congress & the Patient Connect Conference Profiles of our upcoming Walk & Roll fundraisers Calls to action: Clinical Trial Readiness study; StoryCorps contributions Inspiring stories from several of our members!   Interested in contributing … Read more of “The latest issue of the Watch is here” »

Last 2017 Watch is out!

Our last Watch issue of 2017 is available now! Highlights include: Team FSHD Cycling participating in the 36th Race Across America An introduction to new FSH Society CEO, Mark Stone San Francisco FSHD Family Day Human growth hormone and testosterone as a potential treatment for FSHD A new genetic mouse model for testing FSHD treatments … Read more of “Last 2017 Watch is out!” »

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” »

FSH Watch Issue 3 is out!

We are excited to announce the arrival of our newest edition of the FSH Watch.  This Watch not only shares patient stories and information on coping with FSHD, but also contains updates on the research projects being funded by the FSH Society with your support!  We are happy to share all of this going into … Read more of “FSH Watch Issue 3 is out!” »

The FSH Watch 2016 Issue 2 is out!

Our newest issue of the FSH newsletter is here!  We’re so excited to share new scientific updates, patient stories, and the latest FSH Society initiatives. Highlights include: The creation of a Clinical Trial Research Network of universities, designed to speed the search for treatments for FSH (cover story); Patient’s brother competes in American Ninja Warrior … Read more of “The FSH Watch 2016 Issue 2 is out!” »

FSH Watch 2016 Issue 1 is out!

Hot off the press, our current issue of FSH Watch keeps you up to date on important advances in research and medical care, as well as news about your Society, regional meetings, and upcoming events. Individuals living with FSHD share their thoughts about “coming out” and their responsibilities as advocates and research participants. Highlights include: Human FSHD … Read more of “FSH Watch 2016 Issue 1 is out!” »