Phase 1: Building the Foundation
Project Mercury has successfully concluded Phase 1, marking a significant milestone in its mission to accelerate global readiness for FSHD therapies. Over the past two years, the initiative achieved its ambitious goal of doubling the number of clinical trial sites worldwide, expanding from approximately twenty to forty. This growth strengthens the infrastructure required to support upcoming therapies and ensures broader geographic representation for patients.
Patient engagement remained at the heart of Phase 1. Registries advanced as essential tools for trial recruitment and long-term monitoring, providing a foundation for real-world evidence that will be critical once treatments reach the market. These efforts were complemented by the near-completion of international care guidelines. Together, these developments underscore Project Mercury’s commitment to improving standards of care and readiness across the global FSHD community.
Industry confidence in the FSHD space has grown significantly during this period. Strategic developments and newly formed partnerships signal a new era of investment and innovation, positioning the community for accelerated progress.
Access and health technology assessment (HTA) readiness also advanced, which made important strides in economic modeling and reimbursement strategies. These efforts will help ensure that once therapies are approved, patients can access them without unnecessary delays, reinforcing the project’s holistic approach to readiness.
Meeting Highlights
The Vancouver meeting brought together global stakeholders to review these achievements and set the course for the next phase. Updates from industry partners highlighted growing momentum in therapeutic pipelines and emphasized the importance of transparent, patient-focused engagement during this period of transition. Governance was another key topic, with Emma Weatherley, CEO of FSHD Global Research Foundation, unanimously elected as the new Chair of the Global Task Force. Her appointment follows Mark Stone’s tenure, which united stakeholders under a shared global mission and laid out the groundwork for the progress now being realized.
Phase 2: Driving Global Impact
With Phase 1 complete, the Global Task Force is now transitioning into Phase 2 with a sharper strategic lens. This next stage will focus on consolidating gains and addressing remaining gaps to ensure that readiness translates into real-world access for patients. Education and advocacy remain central to the strategy, with plans to launch a centralized education repository and disseminate international care guidelines and lay summaries globally.
Project Mercury remains steadfast in its mission: to accelerate global readiness for FSHD therapies and ensure timely, equitable access for patients worldwide. Together, we are building the infrastructure, knowledge, and advocacy needed to turn trials into treatments.