Project Mercury is built on the conviction that meaningful change in FSHD research and care must be driven by those most affected—patients, families, and the communities that support them. At the heart of this global initiative are the Country Working Groups (CWGs), where national voices converge to shape international impact.
This section highlights the extraordinary contributions of CWGs, with a special focus on how patient organisations are not only participating—but leading. Their lived experience, strategic insight, and relentless advocacy are accelerating progress toward therapies and reshaping the landscape of FSHD.
Spotlight on FSHD UK: Raj Badiani and the Power of Purpose
When Rajeshri (“Raj”) Badiani founded FSHD UK, she was driven by a quiet but fierce determination: to give the UK’s FSHD community a voice, a presence, and a future. What began as a solo mission has grown into a national movement—and now, through Project Mercury, into a global force for change.
From Local Vision to Global Impact
FSHD UK’s decision to join Project Mercury wasn’t just strategic—it was deeply personal. “Project Mercury’s aims mirrored our own,” Raj shares. “Patient engagement, clinical trial readiness, and building strong networks—these were our pillars too.” But the leap from national to international was bold. At the time, FSHD UK wasn’t even a formal charity. Becoming one was a deliberate act of commitment: to ensure the UK had a seat at the global table and a hand in shaping the future of FSHD therapies.
Raj’s journey is one of courage and community. “I started FSHD UK nervously, on my own,” she says. “But I was fortunate to be joined by patients, clinicians, researchers and other advocacy groups such as the FSHD Society, MDUK and the UK FSHD Registry – all who believed in the mission.” That same spirit now fuels Project Mercury—a coalition of passionate leaders, united by a shared goal: to deliver therapies to the FSHD community.
UK’s Contributions: Expertise, Advocacy, and Heart
FSHD UK brings more than passion—it brings expertise. From Leo Koeser’s pivotal work on Access, to Andrew Graham’s well established global connections, to Raj’s own insights on project management and strategic rigor, the UK team is deeply embedded in the engine room of Project Mercury (Meet the UK team: Team – FSHD UK).
Their reach is impressive: three clinical trials, two natural history studies across multiple sites plus many of the FSHD UK clinicians and researchers lead key workstreams in the European Trial Network (ETN); FSHD UK plays active roles in FSHD Europe, CTRN, TreatNMD, and the World Alliance. “We bring knowledge, experience, and a commitment to collaboration,” Raj explains. “And we’re proud to help shape the direction of Project Mercury.”
Strengthening the UK’s National Efforts
Project Mercury has also transformed FSHD UK’s national strategy. “Access to therapies was an eye-opener,” Raj admits. “Understanding what it takes to bring a therapy across the line in each country—it’s complex, essential and critical.” The UK FSHD Registry, a cornerstone of clinical trial readiness, has become a renewed focus. “It’s a key asset. We must ensure it survives and continues to serve our community.”
Global partnerships have been another highlight. “Learning from other well-established organisations, forging strong relationships—it’s been invaluable.”
Moments of Solidarity That Matter
One moment stands out: the first meeting of Country Working Group leaders in Leiden. “There was alignment, enthusiasm, and hope,” Raj recalls. “And beyond the work, we’ve built lifelong relationships. If any one of us needed help, we’d step up. That’s the spirit of Project Mercury.”
This solidarity isn’t just professional—it’s personal. It’s about care, support, and a shared commitment to serve the FSHD community.
Looking Ahead: A Future Built on Access and Unity
FSHD UK’s hopes for the next phase of Project Mercury are clear: Access to Therapies. “If we get this right, it will be a mammoth achievement,” Raj says. But the vision doesn’t stop in 2027. “Project Mercury must continue. We need its heartbeat to continue, deliver what we have started and aim higher for the future!”
FSHD UK’s goals for 2026/2027 reflect this ambition: strengthening the registry, expanding patient engagement, and deepening global collaboration.
Raj Badiani and FSHD UK remind us that change begins with one voice—but grows through many. Project Mercury is more than a project. It’s a promise. A promise to uplift, to unite, and to deliver hope to every person living with FSHD.