Mika Mae’s story

Editor’s note: Mika Mae Jones passed away in June 20, 2019, at age 32 after sustaining severe head trauma from a fall. The FSHD community mourns her tragic loss. She wrote this essay for us shortly before her death. We publish it in her honor and memory. With fellow FSHDer, Alexandrea Comstock, Mika Mae co-founded … Read more of “Mika Mae’s story” »

FSHD Society signs agreement to expand CTRN

From PRWeb The FSHD Society announced today that it has signed a memorandum of understanding to enter into a three-year agreement to enable the expansion of the international facioscapulohumeral muscular dystrophy (FSHD) Clinical Trial Research Network (CTRN). FSHD is a hereditary muscle-damaging condition that affects an estimated one out of 8,000 people, or nearly one million men, women, … Read more of “FSHD Society signs agreement to expand CTRN” »

First Meeting of FSHD Israel

by Haviva Ner-David This past August 9th was the first official meeting of FSHD Israel, initiated by my 18-year-old daughter Hallel after we represented Israel in the first International FSHD Conference in Marseille in June. We were an intimate group of twelve – some FSHDers (including myself) and some our partners and/or care takers – … Read more of “First Meeting of FSHD Israel” »

Charis Himeda talks about CRISPR and FSH muscular dystrophy

From the FSHD Society’s webinar series on facioscapulohumeral muscular dystrophy. Charis Himeda, PhD, of the University of Nevada Reno, discusses her groundbreaking work showing how CRISPR “gene editing” technology can be used to repress the DUX4 gene implicated in FSHD, and answers questions from the audience. Check out her video below. If you have further … Read more of “Charis Himeda talks about CRISPR and FSH muscular dystrophy” »

Fulcrum Therapeutics Announces Initiation of ReDUX4, a Phase 2b Clinical Trial of Losmapimod for FSHD

August 19, 2019 at 7:00 AM EDT From Fulcrum press release.  PDF Version CAMBRIDGE, Mass., Aug. 19, 2019 (GLOBE NEWSWIRE) — Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases, today announced it has initiated ReDUX4, a Phase 2b clinical trial of losmapimod in facioscapulohumeral muscular dystrophy (FSHD). … Read more of “Fulcrum Therapeutics Announces Initiation of ReDUX4, a Phase 2b Clinical Trial of Losmapimod for FSHD” »

What’s in a name?

We’re now the FSHD Society Discerning readers will notice that we have changed our name and logo to align with how the rest of the world abbreviates facioscapulohumeral muscular dystrophy. This is not simply an exercise in trendiness. When we were the FSH Society, we led the charge for using “FSHD,” providing a single, consistent … Read more of “What’s in a name?” »