Tag Archives: newsletter

The FSH Society Spring Watch is out!

The FSH Society is pleased to announce their Watch Newsletter for Spring 2017. Featured in the Watch are articles about

  • FSH March 2017 Watch CoverHighlights from the FSH Society’s 2016 International Research Conference (page 1)
  • Young Hollywood comes out in support of the Los Angeles Ghostly Gala (cover story)
  • New FSHD family cell lines being released for research after 30 years in limbo (page 3)
  • Cognitive-Behavioral Therapy and exercise’s ability to slow muscle degeneration (page 4)
  • Team FSHD Cycling’s Race Across America (page 15)
  • How to find Free Money, from our Development Officer, Beth Johnston, in her advice column “Ask Beth” (page 5)
  • A cancer drug that might point the way toward a treatment for FSHD (page 6)
  • Accessibility hacks, mobility aids, and tips (page 8)
  • Two FSHD mouse models (pages 12 and 17)

And much more! To read the full Watch, click here.

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: fshwatchissue2cover

  • 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 on NBC to raise awareness about FSHD (cover story);
  • The establishment of a new registry for FSH patients and family members to donate tissues for scientific research (page 3);
  • More Q&A with Dr. Rabi Tawil, discussing starting a family with FSHD, whether there is still a need for muscle biopsies, and how new guidelines might affect FSHD 2 patients (page 5);
  • A patient who takes on Chase Bank for discrimination in their loans (page 7);
  • A new Boston-area start-up begins testing biotech treatments for FSHD (page 8);
  • Chicago and South Florida patients start new FSH support groups (pages 10 and 12);
  • How to take advantage of the tax-advantaged savings accounts for family members with disabilities (page 15);
  • Interview with author and FSHD patient Belinda Miller (page 13).

Click here to read


FSH Watch Spring 2014

2014-SpringWatchCoverYou 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 DNA sequences that activate expression of DUX4 protein only in FSHD muscle; factors that increase the risk of respiratory insufficiency in some FSHD patients; the first published high-throughput drug screening study for compounds that block DUX4 toxicity; and a method to grow human FSHD muscle in a mouse.
  • Patients and researchers share their personal stories in Washington DC as they advocate for resources for FSHD.
  • Our Events Calendar for this year. Fundraisers from coast to coast are raising awareness and dollars for FSH Society programs and research grants. Please help spread the word!

FSH Watch Winter 2014


Highlights include:

  • Report from the 2013 International Research Consortium meeting in Cambridge, Massachusetts. Advances in basic research, clinical trials and future drug targets.
  • Introducing our new Celebrity Honorary Board. Stars from film, TV, music and sports sign on to help raise awareness.
  • University of Massachusetts Medical School opens new FSHD research center and clinic.
  • Photos and stories from the Celebrity Walk ‘n’ Roll, New York City benefit concert, fundraisers in Atlanta and golf tournaments from Toronto and Abilene.

And much more! Read or download the full 2014 Winter Watch here.

FSH Watch Annual Research Report 2013

FSHWatch-SummerFall2013Our annual review of scientific research funded by the FSH Society has just been published in the Summer/Fall 2013 issue of the FSH Watch newsletter. The issue includes a list of the top papers from the past year with comments about their significance, opportunities for research volunteers, and the latest Society news. The full issue is available here to read and download (pdf).