Shared Targets, Shared Hope: VCP Families and Researchers Unite Around FTD-ALS-Neuromuscular Research
- Cure VCP Disease, Inc.
- Aug 13
- 3 min read
Highlights from the 2025 Association for Frontotemporal Degeneration (AFTD) Education Conference in Denver, Colorado.
Cecilia and I came to Denver expecting to learn about the latest FTD research - we left with something far more powerful: a renewed sense of hope and collaboration. As Development and Partner Relations Coordinator for Cure VCP Disease, I attended the 2025 AFTD Education Conference in May 2025 alongside my wife Cecilia, a dedicated VCP advocate.
Hosted by The Association for Frontotemporal Degeneration (AFTD), this annual event brings together a vibrant and growing community of researchers, caregivers, people living with FTD, and advocacy organizations—all united by a shared mission: advancing understanding and treatment of frontotemporal degeneration.
VCP (Valosin-Containing Protein) disease is a rare genetic condition that affects multiple body systems, causing both brain and muscle symptoms that researchers are discovering are part of a broader, more interconnected spectrum than previously understood.
The Big Picture: How FTD, ALS, and Neuromuscular Research Is Coming Together
One of the most impactful aspects of the conference was AFTD's inaugural genetic symposium on the first day, which recognized both the unique challenges faced by those affected by genetic FTD and the extraordinary opportunities to accelerate research and treatment development when families understand whether they're affected by familial FTD. This focus on genetic forms of the disease created the perfect backdrop for engaging directly with leading scientists in the field. We were grateful to hear from and connect with researchers like Michael Benatar, MD, PhD and Corey McMillan, PhD whose work is significantly advancing the frontiers of FTD and VCP disease research.
A key theme throughout the conference was the increasing scientific recognition of the overlap between FTD and neuromuscular diseases like ALS and Inclusion Body Myopathy (IBM). Rather than viewing these conditions in isolation, researchers like Dr. Benatar and Dr. McMillan are embracing an integrative approach that acknowledges shared pathology and mechanisms. This shift has powerful implications: by identifying common therapeutic targets, researchers are unlocking the potential for treatments that could benefit multiple conditions - accelerating the path to effective therapies for the entire FTD neuromuscular spectrum.
We encourage everyone to watch Dr. Benatar and Dr. McMillan's presentation, where they discuss the tremendous potential value of researching FTD, ALS, and IBM as interconnected conditions rather than separate diseases, and specifically explore how VCP disease serves as a crucial bridge in understanding the broader neuromuscular spectrum - offering new hope for accelerated therapeutic breakthroughs across all these conditions.
Why We Show Up:
Bringing the Patient Perspective to the Table
As VCP-FTD caregivers and family members, our presence at conferences like this is impactful. We bring irreplaceable perspectives to discussions with researchers, industry partners, bio-pharma companies, and other advocates. Our lived experiences help shape research priorities, ensure studies address real-world needs, and keep the human impact of these diseases at the center of scientific advancement. By representing our families in these unique collaborative spaces, we help bridge the gap between laboratory discoveries and meaningful treatments that improve lives.
Building a Stronger Community
Beyond the research presentations, the conference offered invaluable opportunities to build relationships and deepen collaboration across organizations. We were especially excited to connect with fellow advocates from Cure MAPT FTD and Cure GRN - organizations that, like Cure VCP Disease, are dedicated to finding cures for genetic forms of FTD.
These connections are more than just networking; they represent a growing coalition of families and advocates united by a shared vision: a future without genetic FTD. By working together, we strengthen our collective network of support, share resources and strategies, and amplify our voices in conversations with researchers, industry partners, and policymakers. The power of this community lies not just in our individual stories, but in our ability to stand together and drive meaningful change in the fight against neurodegenerative disease.
Looking Ahead with Hope
The AFTD Conference was both educational and deeply inspiring. It reaffirmed our dedication to our shared mission of developing life-changing treatments that address VCP disease and FTD as interconnected conditions and reminded us that the most significant breakthroughs happen when scientists, advocates, and families stand together with unified purpose. We left Denver filled with hope and determination - energized by the knowledge that our collective commitment is driving us closer to the treatments our families desperately need.
