IRC: Reflecting on My Experience as an Industry Professional and FSHD Advocate 

By Raymond Huml, MS, DVM, RAC-US 

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I was privileged to attend the 2026 International Research Congress (IRC) on FSHD, held June 25–26 in Rosemont, Illinois. As the father of two children living with FSHD and an industry professional with more than 30 years of experience, I attend meetings like the IRC through more than one lens. I am there as a parent and advocate seeking information that can benefit the FSHD community, and I am also there as a professional working to understand how the science, clinical development landscape, and patient experience intersect. 

My veterinary training has helped me translate complex science, medicine, and what I often think of as “healthspeak.” That background makes it easier for me to interpret clinical trial methodology, medical terminology, genetic nomenclature, and the specialized language often used in pharmaceutical development. Just as important, it gives me a way to share what I learn with others who may not have the same technical background, but who are deeply invested in the progress being made for FSHD. 

Although I was only able to attend the second day of the IRC, the experience was extremely valuable. The FSHD Society’s annual global research meeting brought together scientists, clinicians, industry partners, advocates, and emerging investigators who are all focused on advancing research and accelerating the path toward effective therapies. Hearing updates from around the world reinforced how much momentum now exists in the field – and how important global collaboration will be in turning that momentum into meaningful progress for people living with FSHD. 

Because I have worked globally, and because my daughter who lives with FSHD now resides in Europe, I was especially interested in meeting leaders from Europe, Australia, and other parts of the international FSHD community. Many of these are people I have followed, supported, or collaborated with through LinkedIn and other advocacy channels. I am also currently a member of the European Rare Disease Task Force, which has deepened my appreciation for the importance of cross-border collaboration in rare disease research and patient advocacy. 

One highlight of the meeting was the opportunity to connect in person with two leaders involved in Project Mercury: Emma Weatherley, who lives with FSHD and serves as Managing Director of the FSHD Global Research Foundation and Chair of Project Mercury’s Global Task Force, and Dr. Nicol Voermans, a Dutch neuromuscular specialist and professor who contributes to FSHD Europe, the FSHD European Trial Network, and Project Mercury’s Global Task Force. These conversations underscored for me how essential it is to bring together lived experience, clinical expertise, advocacy leadership, and research infrastructure if we are going to accelerate progress responsibly and effectively. 

I take great pride in keeping up with milestones in the FSHD space, but the pace of progress has become difficult for any one person to follow. More than 20 companies are now pursuing a variety of approaches to help people living with FSHD, including several programs focused on the disease mechanism associated with DUX4. That level of activity is encouraging, but it also creates a real need for forums where the community can compare approaches, understand emerging data, and place individual milestones in a broader scientific and clinical context. 

For me, that is the unique value of the IRC. It is not simply a place to hear research updates; it is a place where the people working across the FSHD ecosystem can learn from one another, challenge assumptions, and build the relationships needed to move the field forward. As both an advocate and an industry professional, I left with a clearer understanding of the scientific landscape, a renewed appreciation for the people driving this work, and a stronger belief that collaboration across patients, families, researchers, clinicians, industry, and advocacy organizations will be essential to finding effective treatments – and ultimately a cure – for FSHD.