My Takeaways from the 2025 FSHD Connect Europe  

By Rick Whitehead 

This past June, I had the opportunity to attend the inaugural FSHD Connect Europe meeting. Here are my takeaways from the conference that I would like to share with the community.  

Much of the conference content will be made available on the European FSHD website, so if you weren’t able to attend in person, there’s still a chance to catch many of the presentations. I’d especially recommend two standout talks: Alexandra Belayew’s opening lecture on Day 1, and Lucienne Ronco’s presentation on Day 2—both were insightful and memorable. 

Keep an eye out, too, for a screening of Marion or the Metamorphosis, an art performance film and documentary by Marion Sellent, an artist living with FSHD. The trailer is currently available on YouTube and the film can be rented on Vimeo. As an artist myself, I found it incredibly moving and inspiring. 

One thoughtful highlight from the conference was a free book shared by Anke Lanser titled You’re Not Alone with FSHD. It’s an excellent resource—especially helpful for friends, family members, or anyone who wants to understand FSHD better but isn’t sure where to start. Hopefully, we’ll see some copies available at the next U.S. conference as well. 

Speaking of which, the next FSHD Connect Conference in the United States has been announced! Mark your calendars for June 27–28, 2026, at the Hyatt Regency O’Hare in Chicago. The weekend will kick off with a meet-and-greet on Friday, June 26—a part of the event I personally look forward to the most. It’s never too early for patients and families to start planning. 

Like many others, I came to the conference eager to learn as much as possible about Avidity Biosciences and the progress of their clinical trial. The early lab results and preliminary outcomes from participants have been encouraging, and it’s clearly become one of the hot topics in the FSHD research space right now. While Fulcrum’s losmapimod trial has ended—and may re-emerge in the future—all eyes are now on Avidity’s trial.  

It’s a promising but selective program, with a reported 55% rejection rate during the screening process. Participation requires a significant commitment, including in-person visits every six weeks, so being located near one of the clinical trial sites is ideal. This trial also takes a very different approach from the Epicrispr gene therapy platform, which is closer to home for me and equally important to watch. 

Currently, the inclusion criteria for the Avidity trial are limited to individuals aged 18–70. If the treatment is eventually approved by the FDA, it’s expected those same age limits would apply—something many advocates hope will change to include both early-onset patients and seniors over 70. These kinds of nuanced discussions often don’t appear in formal presentations, but they do come up in the informal conversations that happen at conferences—another reason being there in person is so valuable. 

Interestingly, several important meetings and presentations took place in the days leading up to the main conference weekend. These sessions were geared toward clinicians and global leaders in the FSHD community and weren’t technically open to patients—but if you were lucky, you might have been able to slip in and listen (quietly, of course).  

Epicrispr is next in line for clinical trials, with screenings already underway. The upper age limit is 75 (though I’m not sure about the minimum age). This is a gene therapy approach, and while it might be considered a bit riskier—I’m all in, regardless. Patient slots are extremely limited right now, and about 30% of those screened won’t qualify because their blood already contains antibodies that recognize the virus used to target DUX4. 

A friend of mine from Switzerland—who was the first to tell me about the trial—said I might be our “man on the moon.” It’s also worth noting that if you participate in one gene therapy trial, you may not be eligible for another in the future. That wouldn’t apply to Avidity, though, since it’s not considered a gene therapy. 

These in-person conferences are incredibly valuable to me. Having the chance to meet others living with FSHD is deeply rewarding. There’s an instant sense of understanding and acceptance. And being able to hear about research firsthand—and even speak directly with the scientists and clinicians leading it—makes the experience even more meaningful. 

I made a lot of new friends at the conference—people from 13 different countries, compared to the usual mix of U.S. states. I even had the chance to speak Spanish with several attendees from Spain and a wonderful woman from Bolivia. 

One of the best parts of attending these conferences regularly is seeing familiar faces again. Friendships deepen over time, especially with people you’ve met at past events. Some of these important voices in our community are usually a bit behind the scenes, but at this world conference, people like Emma from Australia were front and center. She’s incredibly friendly, deeply informed, and a true crusader for FSHD in Australia—now making her mark on the global stage. 

My FSHD Rolodex has grown, and I now know so many of these key figures on a more personal level, which makes all the difference. 

Finally, I got to say goodbye and happy retirement to June Kinoshita, who has been of tremendous help and so personable. I also got to meet Ashley, such a wonderful person and advocate, to have on our side, a treasure. She will be taking over some of June’s duties.  

If you’ve never been to a Connect Conference, I wholeheartedly recommend going. Hope to see you in Chicago next year! 

Rick of Knoxville 

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Rick is one of the FSHD Society’s volunteers and currently serves as one of our Gathering Place Wellness Hour moderators. He currently lives in Knoxville, Tennessee, is a professional artist, and welcomes a friendly conversation at any time. To join the Wellness Hour, visit our Lieu de rassemblement page for more information.