During a recent FSHD Society University webinar, Project Mercury Chair Emma Weatherly reflected on three years of remarkable global collaboration and outlined the initiative’s strategic direction for the future.
Emma highlighted how Project Mercury was established in response to a growing need to ensure that healthcare systems would be prepared for emerging FSHD therapies. What began as an ambitious concept evolved into a coordinated international effort spanning Australia, Brazil, Canada, France, Germany, Italy, the Netherlands, Spain, the United Kingdom, and the United States.
- The webinar showcased several significant achievements made possible through patient-led collaboration, including:
- Expanding FSHD registries to include more than 10,000 patients worldwide
- Increasing the number of qualified clinical trial sites from 25 to 53
- Developing practical readiness toolkits and frameworks
- Helping shift the global conversation from reactive access planning to proactive preparedness for future therapies
Emma also discussed the key priorities for the coming year and shared plans for Project Mercury’s transition into a sustainable global platform within the World FSHD Alliance ecosystem.
The session demonstrated the power of international collaboration among patients, advocates, clinicians, researchers, and other stakeholders. It underscored how coordinated efforts across countries and disciplines have strengthened global readiness for future FSHD treatments and highlighted the important work that remains as the community prepares for potentially transformative therapies.
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