Lighting the Way to a Cure

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Sharegiver Hour – Responding to the Fulcrum study

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Aug 31 @ 8:00 pm - 9:00 pm

8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT

This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. This month, June Kinoshita, director of research and patient engagement at the FSHD Society, will answer your questions about how you can support your family member(s) with FSHD in participating in clinical trials. We will also discuss genetic testing, which will be required for trial volunteers and also for future anti-DUX4 therapies.

Please respect our rules restricting this meeting to caregivers (or “sharegivers,” as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don’t want to publicly post the Zoom meeting link (to avoid “Zoom bombers”), please register by clicking on the button below.