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Stakeholders include people and organizations from various backgrounds and expertise partnering together to accomplish Project Mercury’s goals. Partners provide resources, expertise and leadership and the current roster includes:
Patients and families with a desire to speed the delivery of effective FSHD treatments everywhere founded and lead Project Mercury.
The World FSHD Alliance was started in 2017 and now comprises dozens of patient advocacy groups around the world who work together to advance research and patient education and engagement. Members of the Alliance lead the Project Mercury Global Task Force and the formal working groups in their respective countries.
Project Mercury’s work in Canada is led by FSHD Canada Foundation, a member of the World FSHD Alliance. The Foundation co-founded and helped fund the launch of Project Mercury in 2022 and serve on the Global Task Force.
The FSHD Society co-founded and helped fund the launch of Project Mercury. They serve as program manager for Project Mercury, providing resources, development and support for its global mission. The Society leads the U.S. working group and serve as Chair of the Global Task Force until the end of 2025 (a position that rotates among members of the World FSHD Alliance).
FSHD Stichting, a member of the World FSHD Alliance, leads the country working group in the Netherlands and is a member of the Global Task Force.
FSHD Global, a member of the World FSHD Alliance, leads the country working group in Australia and is a member of the Global Task Force.
FSHD UK, a member of the World FSHD Alliance, leads the country working group in the United Kingdom and is a member of the Global Task Force.
FSHD Europe, a member of the World FSHD Alliance, coordinates Project Mercury work with multiple FSHD groups across Europe and is a member of the Global Task Force.
As a founding and sustaining industry member of Project Mercury, Fulcrum serves on the Global Task Force. Fulcrum provides insights, expertise and financial support for Project Mercury’s work in patient access, clinical trial capacity-building and patient and clinician education globally.
As a founding industry member of Project Mercury, Avidity serves on the Global Task Force. Avidity provides insights, expertise and financial support for Project Mercury’s work in clinical trial capacity-building and patient education in the U.S.
Patient and clinician engagement in clinical research is critical to achieving Project Mercury’s goals. To help facilitate this engagement, TREAT-NMD provides an infrastructure that is accelerating FSHD research and therapy development, increasing collaboration, improving patient care and helping to support ‘clinical trial readiness’ on an international scale. Through their Global FSHD Registries network and education programming, they are a vital partner in Project Mercury’s success and serve on the Global Task Force.
