Fulcrum and the FSHD Society Reflect on Partnership at Advocacy Event
On February 28th, Fulcrum Therapeutics hosted a Rare Disease Day Advocacy Event at their headquarters in Cambridge, MA. This gathering underscored the ongoing partnership between Fulcrum and the FSHD Society, highlighting our collective efforts in the fight against FSHD.
The panel discussion included Fulcrum's EVP of Patient Experience, Mel Hayes and FSHD Society representatives CEO Mark Stone, Director of Patient Engagement Anna Gilmore, and Chief Business Officer Ken Kahtava. The conversation focused on the origins, achievements, and future direction of our collaboration with Fulcrum, focusing on two new initiatives: Project Mercury and the FSHD Navigator.
Project Mercury, a key topic of discussion, is a proactive step towards enhancing clinical trial readiness and ensuring patient access to emerging therapies. Ken Kahtava shared his thoughts on the collaborative power of this initiative: "The answers are often out there, although they are not always readily apparent or visible. I’m amazed every time I reach into Mercury I am connected to answers and resources that I didn’t know existed." His words underscore the importance of cooperation and shared knowledge in overcoming the challenges the FSHD Community will face in getting treatments into the hands of patients.
The FSHD Navigator Program, introduced by Anna Gilmore, aims to provide a comprehensive support network for individuals affected by FSHD. This initiative is committed to delivering personalized support and keeping patient needs at the forefront of research and care strategies.
Anna shared a poignant reminder of our mission: "The work we’re all doing is about caring for people first. It's easy to get lost in tasks, timelines, milestones, deliverables, but it’s important to zoom back out at the end of the day and remember the people we’re doing the work for."
As we mark Rare Disease Day, the partnership between Fulcrum Therapeutics and the FSHD Society stands as a powerful example of how collaboration can drive progress in the face of rare diseases. The journey ahead is filled with challenges, but focusing on the individuals we serve and leveraging collective knowledge and resources can lead to extraordinary outcomes. Our path forward is paved with hope, innovation, and a deep-seated belief in the power of community.
Get more information on Project Mercury and the FSHD Navigator.
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