by June Kinoshita, FSHD Society
Over the next 12 to 24 months, four clinical trials for FSH muscular dystrophy are expected to launch. All of these upcoming trials all target the root cause of FSHD, the toxic DUX4 gene. For the first time, we have a chance at slowing disease progression, or even stopping FSHD in its tracks. This is why one of our urgent priorities is to make sure our community is trial-ready.
Since the founding of the FSHD Society more than 30 years ago, our journey has been a slow but steady climb up a steep hill. Now here we are, in 2022, with the summit in sight. Through funding of research grants, our Therapeutic Accelerator initiatives, and programs to expand and strengthen our community of stakeholders, the FSHD Society has had a disproportionately large impact. Take, for example, how the Society’s investment in the Clinical Trial Research Network has been multiplied many times over by other funders. As a result, we have greatly accelerated our ascent up that hill!
Our co-founders, Dan Perez and the late Steve Jacobsen, and the hundreds of early supporters who formed the FSHD Society, deserve our utmost gratitude. They knew the journey would be long and challenging, but they were driven by the conviction that they would deliver treatments and ultimately a cure if they – and we, their successors – persevered.
It’s worth taking a moment to reflect on where we stand today, thanks to the vision and tireless efforts of the FSHD community’s pioneers.