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!” »

FSH Watch Winter 2015 issue is out

Highlights include: Summary of our 2014 FSHD Connect Conference held in Boston. Senator Elizabeth Warren addresses the 2014 FSHD Connect Conference. The essential role epigenetics plays in FSHD. Meet the new FSH Society staff members. The effects of DUX4 expression on muscle cells. The FSH Society’s 2014 International Research Meeting. Antioxidant supplement trial results. New FSHD … Read more of “FSH Watch Winter 2015 issue is out” »

FSH Watch Summer/Fall 2014 issue is out

Highlights include: Annual research report, with updates from FSH Society grant recipients. Groundbreaking study establishing that FSHD may be the most prevalent of muscular dystrophies. A new NIH-funded Wellstone Center for Muscular Dystrophy in Seattle, Washington. The life-changing impact of the #FSHDSelfies campaign. A genetically engineered mouse with an on-off switch for DUX4. American Society … Read more of “FSH Watch Summer/Fall 2014 issue is out” »

FSH Watch Spring 2014

You can read and download it by clicking here. Highlights of this issue include the following: Details about FSHD Connect, our biennial meeting that brings together patients and families with some of the world’s foremost researchers and clinicians for two days of immersive learning and networking. The latest scientific advances including the discovery of two … Read more of “FSH Watch Spring 2014” »