Quarterly Skill Shares
Every three months, the steering committee offers virtual meetings and a welcoming space for FSHD families, advocates, clinicians, and researchers to stay informed about developments from all over the world. Our quarterly skill share meetings feature expert-led sessions followed by interactive Q & A, ensuring practical knowledge exchange and actionable insights.
Upcoming Meetings
Saturday, July 11th (2pm CET / 8 am EST):
Saturday, October 3rd (2pm CET / 8 am EST)
tbd
Past Meetings
Saturday, July 11th
Highlights from IRC & FSHD CONNECT
How Close Are We? An Inside Look with Lucienne Ronco, PhD (Chief Science Officer, FSHD Society). Open Q&A follows the talk.
Lucienne Ronco, PhD, Chief Science Officer at the FSHD Society, will answer the question FSHD families are asking: how close are we? Lucienne was in Chicago last month for the IRC and FSHD CONNECT meetings, in the room where the newest science was presented and where industry laid out the path to treatments. She’ll bring it back to us and put it in plain terms: what looks genuinely promising, and what it means for people living with FSHD right now. You’ll get an honest, close-up look at where the research stands, and the chance to put the questions your own community is asking directly to Lucienne. Whatever you take from the hour, you can carry home to your FSHD community and network.
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Saturday, April 11th
“FSHD Muscle Regen Update”
Neil Camarta shared progress on a practical, partnership-driven approach to muscle regeneration R&D. He described ongoing work to identify additional candidates and explore combination-therapy strategies.
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Saturday, January 10th
“Project Mercury”
Strong communities underpin sustainable organizations, enabling us to advocate effectively and prepare for future therapies.
Want to learn more about past or upcoming meetings? Use our contact form to stay informed and connected.