“I’m focused on getting posture right and core as active as possible.” – Ulrike Uta At this month’s Feeling Fit with FSHD sessions, physiotherapist Ulrike Uta, MSc, MCSP, of the… Read More »
How postural changes lead to pain
European FSHD patients speak out
To coincide with World Rare Disease Day FSHD Patients across Europe say what they want from clinical trials Announcement by FSHD Europe FSHD Europe is pleased to publish the Lay… Read More »
Find your rope team
When the going gets tough, your team will hold you up by Leigh Reynolds, FSHD Society Army Command Sgt. Maj. Gretchen Evans earned the highest rank an enlisted soldier can… Read More »
Vita Therapeutics seeks volunteers
Participate in a research study on a muscle regenerating treatment for FSHD Vita Therapeutics is a cell engineering company harnessing the power of genetics to develop cellular medicines in the… Read More »
Avidity gets orphan drug designation
Avidity Biosciences announced this week that it had received FDA Orphan Drug Designation for its experimental FSHD treatment, called AOC 1020. This does NOT mean the drug is now available… Read More »