FSHD Society Hosts First-Ever Bilingual FSHD 360 Conference in Montreal 

By Ashley Ferreira  

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On Saturday, May 31, the FSHD Society welcomed members of the FSHD community to Brossard, Quebec, for our Montreal FSHD 360 Conference. With 32 patients, family members, caregivers, healthcare professionals, and advocates in attendance, the event provided a full day of education, connection, and community building. 

The FSHD 360 program is designed to meet individuals and families wherever they are on their FSHD journey by providing practical information, expert guidance, and opportunities to connect with others who understand the challenges of living with FSHD. Throughout the day, participants engaged in discussions focused on both the science of FSHD and the everyday realities of living with the condition. 

A major milestone for the Society, this was our first bilingual FSHD 360 conference. The majority of presentations were delivered in French, with several sessions presented in English, helping us better serve the diverse needs of the Quebec FSHD community. 

The program featured a wide range of topics, including: 

• The role of occupational therapy in maintaining independence and quality of life 
• Pain management strategies for patients  
• Updates on the Canadian Neuromuscular Disease Registry (CNDR) and BetterLife FSHD 
• Patient advocacy and the importance of equitable access to treatments 
• Nutrition and dietary considerations for adults with FSHD 
• The latest advancements in FSHD research and what may be on the horizon 

One of the most meaningful aspects of the day was the opportunity for attendees to connect with one another. Whether sharing experiences during breaks or asking questions of our expert presenters, community members were able to learn from each other and strengthen their support networks. 

We would like to extend a special thank you to our Quebec Chapter Directors, Sylvain Côté and Louis-Vincent Côté, whose dedication made this event possible. Their efforts to translate presentations, marketing materials, and educational resources helped ensure the conference was as accessible and welcoming as possible for our Montreal community. 

We are also deeply grateful to the FSHD Canada Foundation for their generous sponsorship and support of this event. Their commitment to the FSHD community helped make this important educational opportunity possible. 

As research continues to advance and the treatment landscape evolves, the FSHD Society remains committed to supporting individuals and families across Canada. We look forward to continuing our work to improve awareness, strengthen access to clinical trials, and advocate for timely access to approved treatments when they become available. 

Thank you to everyone who joined us in Montreal. We look forward to seeing you at a future FSHD 360 event as we continue working together to build a stronger, more connected FSHD community.