July 2026 Multi-Chapter Meetings Recap

On July 29th and 30th 2026, our FSHD Communities came together once again for our summer Multi-Chapter Meetings. We host these meetings to provide our chapter members with a regular opportunity to both: 1) build community relationships, and 2) to stay informed and educated about FSHD. 

Amanda Hill, our Research and Care Programs Officer, presented the “Biggest Takeaways and Highlights from the 2026 International Research Congress on FSHD (IRC)”, which was followed by regional breakout room conversations.  

Included in her presentation were updates on: 

• Clinical trial data from Roche, Sarepta, and Epicrispr;  

• Pre-clinical data and announcements from Souffle, Altay, and Satellos;  

• Other highlights, including a new potential biomarker, immune findings, and non-pharmacological management of FSHD;  

• And, her summary of overall key takeaways from the conference. 

If you were unable to attend either of the meetings, or would like to hear the presentation(s) again, the recordings can be found here: 

July 29 – East and Central time-zone chapters (Video) 

July 30 – Mountain and Pacific time-zone chapters (Video) 

Presentation slides can be found HERE

Our next regional multi-chapter meetings will be held in October. Stay tuned for more information on the topic and exact date & times. 

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Note: Follow-up to un-answered question from 7/29/26 meeting: 

To the question: “How does the single dose suppress DUX4 on new cells?” 

“Thank you for the great question about how a gene therapy like Epicrispr’s EPI-321 continues to have an effect in newly divided cells, given that it is a one-time delivery. And thank you for your patience and understanding as I confirmed my own knowledge on the topic! 

 The answer to the question is nuanced, and there are a couple of important concepts to understand: 

1. Skeletal muscle cells don’t divide. They are mature cells that are considered “terminally differentiated” and do not undergo further cell divisions. Therefore, a single dose of EPI-321 could, in theory, get into your existing muscle cells and restore methylation (preventing the expression of DUX4), and those cells would simply stay that way for the rest of their lives. 

1. New muscle cells arise from the division of muscle stem cells. We think and hope that EPI-321 will also get into the stem cells and restore methylation, and that when those stem cells divide and differentiate into mature muscle cells, the methylation will remain in its restored state. However, we don’t know for sure how well EPI-321 will get into the stem cells or how long the methylation might last over multiple cell divisions. This is part of what Epicrispr aims to better understand in their clinical trial. 

In summary, we hope that EPI-321 can restore methylation and prevent DUX4 expression in both your existing muscle cells and in the stem cells that grow into future muscle cells. However, the work to confirm this is ongoing. “