Date(s) - Saturday, February 16, 2019
10:30 am - 1:00 pm
Many thanks to everyone who was able to attend our initial Philadelphia chapter meeting in September. The feedback was very positive and provided guidance regarding future meetings: Many of you commented that meeting other people with FSHD and learning their stories was the highlight of the meeting. We had people spanning a wide range of ages, at many different levels of impact. Exchanging tips and techniques is important as it can help each of us to deal with FSHD more effectively.
Our guest speaker this month will be Jeremy Stansbeary, who will be sharing with us his work on the Resolve Study. He is working to help set standards for clinical trials by creating disease-relevant outcome measures and optimizing inclusion criteria. This information will be crucial to overcoming barriers to drug development in FSHD.
We look forward to seeing as many of you as possible in February!