Smiles, Science, and Solidarity: Our Experience at FSHD Europe Connect 

By Selina Lai, Pacific Northwest Chapter Director  

Our attendance at the Denver Patient Connect Conference last June inspired us to plan a summer trip to Europe to participate in the first-ever FSHD Europe Connect Conference in Amsterdam. We arrived in style—World FSHD t-shirts and my orange slice earrings—proudly representing our community. The fashion sparked photo ops and questions, but it was our smiles that drew people in. We first met a couple from Israel starting an FSHD nonprofit, then Joanna from Poland, meeting other patients for the first time. A few of us from “across the pond” were delighted to reconnect in Amsterdam.   

In the foyer, four cappuccino machines worked overtime as 200 patients from across Europe mingled before the keynote by Marion Sellenet, artist and filmmaker of “Marion or the Metamorphosis.” She enriched our souls with her honest and open story of her FSHD journey and her courageous and inspiring approach to accepting her diagnosis.  That was followed by an overview of the European Clinical Trial Network. Next, Alexandrea Belayew, a renowned European FSHD researcher, presented highlights from the International Research Congress in a relatable, engaging way. 

Knowledge is power, and the rest of day one focused on empowering patients. Breakout sessions covered FSHD genetics, physical therapy, mental health, early-onset FSHD, nutrition, and mobility aids—giving attendees tools to make informed decisions about their care. 

Conversations flowed during breaks and meals, forging lasting connections. We shared dinner with Linda from FSHD Greece and Ally Roats, Early-Onset Leader for the FSHD Society. We reflected on the crowd’s energy, the spirit of support, and the belief that collaboration and shared knowledge will improve lives for all FSHD patients. 

Sunday morning brought more excellent sessions: updated International Standards of Care, clinical trial readiness, and the BetterLife FSHD Research Hub. The final panel gathered international stakeholders to discuss strategy, collaboration, and the importance of “living your best life.” 

Throughout the weekend, we witnessed a resilient, vibrant community doing just that—living its best life. We left feeling grateful to the scientific community for their dedication to researching this quirky disease and filled with hope and promise for future treatments. The connections we made, the knowledge we gained, and the stories we heard will stay with us always.