September 2026 Wellness Hour Meeting – Click to Register

Sept 14, 2026 | 4:30-6:00pm ET

Exploring the Possibilities for Patient Led Research on FSHD

Do you have health concerns related to FSHD that no one in the medical community is addressing? Join us to explore the emerging field of Patient Led Research and how we could apply it to FSHD.

Together, we will:

• Examine what Patient Led Research is and how is it different from traditional research approaches
• See how Patient Led Research is being used successfully in the health field as well as in other important areas
• Collectively generate a list of health issues and topics that you are most interested in having investigated
• Consider other perspectives, healing traditions and models of health that can be used in conducting this research, and
• Brainstorm ways to actually pursue these topics and obtain much needed information and wisdom about how to better take care of ourselves.

This session will be highly interactive, so please come prepared with your thoughts and interests.

Led By: Ranae Beeker and Gregg Lichtenstein

Join us at 4:30 p.m. EST – 30 minutes before the main session – for some informal conversation with Rick Whitehead.

Remember to register in advance in order to receive the link for the session.