There are exciting new developments in FSHD genetic testing. A new genetic test for FSHD is now being offered by PerkinElmer Genomics, a global company known for scientific and medical testing services. Other companies and groups are likely to follow suit. This is the first major innovation in FSHD genetic testing in nearly three decades… Read More »
Genetic testing for FSHD—a new frontier
Finding a way to keep working
by Lynn Stevens, Bossier City, Louisiana About 10 years ago, the progression of FSHD on my body forced me to begin evaluating whether I should continue trying to work full-time or consider what was next for me. I couldn’t imagine sitting on the sidelines, as this was not in my DNA (pun intended). But after… Read More »
‘Eddie-mechanics’ was my secret to success
by Ed Barocas, Montclair, New Jersey In spring of 2019, I received two awards for my legal work, the New Jersey Law Journal’s Attorney of the Year Award, and the American Civil Liberties Union’s Roger Baldwin Award for a lifetime of defending civil liberties. The ceremonies were beautiful but bittersweet. I had announced my retirement… Read More »
Losmapimod as potential COVID-19 treatment?
Our science team has often discussed the potential of therapies for facioscapulohumeral muscular dystrophy to address other conditions such as cancer, based on the biology of the disease. Now we have learned that losmapimod, currently in a Phase 2b clinical trial for FSHD, will be investigated as a treatment for COVID-19. According to a press… Read More »
CEO’s 2020 second quarter report
Mark Stone, the FSHD Society’s president and CEO, reported on the Society’s activities at his second quarter report to stakeholders on May 20, 2020. The webinar recording is now available (click below). He highlighted how the FSHD Society’s research initiatives, International Research Congress, FSHD Connect conference, Voice of the Patient Forum, community support, and fundraising… Read More »
Dyne ramps up its FSHD program
Dyne Therapeutics, a Waltham, Massachusetts, biopharmaceutical company, announced yesterday that it is accelerating its FSHD therapy development program. Here is their press release: Dyne to evaluate therapies targeting genetic cause of FSHD under agreement with international research organization UMONS Leading FSHD researcher Jeffrey Statland, M.D., appointed to Scientific Advisory Board WALTHAM, Mass. – Dyne Therapeutics,… Read More »