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On June 29, 2020, the FSHD Society hosted the Voice of the Patient Forum. For those familiar with FDA meetings, this was our EL-PFDD, a Patient-Focused Drug Development meeting. The […]
[…] the generosity and courage of our patient community who volunteer for important clinical studies in FSHD. Many of you have given your valuable time, undergone complicated muscle strength test, filled […]
[…] cause of the disease. But this means that people will need a genetic test for FSHD in order to participate in clinical trials and to be prescribed these treatments (once […]
[…] leaders. A lesser-known South Dakotan, but equally impressive, is Tana Zwart, a member of the FSHD Society and the second adult to serve as a Muscular Dystrophy Association (MDA) national […]
[…] inhibits the activity of DUX4, implicated as the root cause of facioscapulohumeral muscular dystrophy ( FSHD). The compound provides resistance to DUX4’s pathogenic effects. It does not affect DUX4 itself, […]
