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.
- 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