Project Mercury is a collaboration program led by FSHD patient advocacy organizations in partnership with experts, biopharma companies and researchers – all networked together. The initiative is focused on solving specific challenges that slow or stop the development and delivery of therapies to people affected by facioscapulohumeral muscular dystrophy (FSHD) around the world.
Project Mercury is led by a Global Task Force in collaboration with Working Groups in various countries and regions. Working together with common goals and timelines in this global-local approach, stakeholders’ risks and resources are shared, work is customized for each country, duplication of effort is eliminated, and everyone gets maximum value from their contributions and efforts. Of course, facilitating this high level of collaboration requires effective project and resource management, which is provided by the FSHD Society, under the guidance of the Global Task Force.
If you want to know more about how Project Mercury operates, submit your enquiry on our Contact page and the Project Mercury partnership manager will be in touch.
Oversight of Project Mercury is facilitated by multiple patient advocacy groups of the World FSHD Alliance through their membership on the Global Task Force. Day-to-day operations, administration, project management and business development is provided by the FSHD Society. Learn more about the Task Force here.
Project Mercury was created in 2022 by two members of the World FSHD Alliance – FSHD Canada Foundation and the FSHD Society. Since then, more partners have joined Project Mercury. See more about our partners here.
Initial funding was provided by FSHD Canada Foundation and the FSHD Society. Additional launch support has been provided by Fulcrum Therapeutics and Avidity Biosciences. The FSHD Society also contributes in-kind and administrative support, as well as ongoing business development. Future funding will come from Project Mercury partners, sustainability efforts of patient advocacy members around the world (members of the Global Task Force), biopharma industry sponsors and global public-private partnerships. The advocacy leaders of the Global Task Force and Country Working Groups provide guidance and direction for acquiring and distributing funding to stakeholders to support their work. If you are interested in partnering with Project Mercury, go to our Contact Page and submit an enquiry to have our partnership manager contact you.
Go to our Contact page and submit an enquiry and our partnership manager will be in touch. Whether you’re a patient, family member, advocacy group, biopharma company, researcher, clinician, regulator, payer or ‘other’ – we’d love to chat!
Formal Country Working Groups are responsible for managing the work of Project Mercury in their area. They are led by local FSHD patient advocacy groups, who also sit on the Global Task Force. Currently, there are Country Working Groups established in Canada and the United States, and starting in May , 2023, the United Kingdom, Europe and Australia. The Global Task Force is responsible for expanding Project Mercury and is actively in the process of doing so based on availability of resources. Submit an enquiry on our Contact page to learn more.
The organizations that founded Project Mercury (FSHD Canada Foundation and the FSHD Society) wanted a name that inspired action and best described their vision for an initiative that is designed to speed the development and delivery of effective FSHD therapies to patients everywhere. So, ‘Project’ = focus, goal-oriented and timely execution; and ‘Mercury’ = the Roman God of Speed.
Project Mercury. The Global Initiative to Speed the Delivery of Therapies for FSHD.
You can read more about our origin and vision here.