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The Association for Frontotemporal Degeneration (AFTD) brought together patients, families, and experts at its 2024 Educational Conference in Houston, Texas on Friday, May 3rd. This dynamic one-day gathering created a space for learning, connection, and collaboration within the FTD community.
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Representing Cure VCP Disease, board member Brandon Feldt and his wife, VCP Advocate Cecilia Feldt, participated in a full day of activities, including panel presentations, breakout sessions, and a keynote address by New York State Senator Michelle Hinchey. The conference fostered both structured learning and valuable informal networking opportunities.
A significant highlight was AFTD's announcement of their redesigned FTD Disorders Registry (FTDDR). This enhanced platform represents a major advancement for FTD research, now enabling participants to specify genes of interest, including VCP – a feature previously unavailable. The registry's development involved careful consultation with AFTD, patients, and families, ensuring that the voices of those affected by VCP disease were incorporated into its design.
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The conference facilitated crucial direct interactions between FTD patients, family members, and representatives from leading research facilities and biotech companies. Penny Dacks, AFTD Director of Scientific Initiatives, orchestrated meetings with key players including Alector, Prevail Therapeutics, AviadoBio, Passage Bio, Denali Therapeutics, and Takeda. These frank discussions addressed important topics such as patient data ownership, clinical study transparency, and risk tolerance in research participation. The conversations emphasized a shared commitment to patient-centered treatment development, providing valuable insights to advance drug development for both FTD and VCP communities.
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While the formal presentations offered substantial educational value, many meaningful connections emerged during informal moments between sessions. AFTD members Shana Dodge, Kim Jenny, and Penny Dacks continued collaboration with Cure VCP Disease to highlight VCP's significance as the fourth most common genetic cause of FTD. A particularly inspiring interaction occurred with Emma Willis, who shared her experience of publicly addressing her husband Bruce's diagnosis. The day concluded with productive discussions about the new registry and VCP data integration, led by the FTD Disorders Registry LLC team, including Carrie Milliard, MS, CGC, CCRC, .
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The strong partnership between AFTD and Cure VCP Disease continues to flourish, with anticipation building for next year's conference in Denver, Colorado. This successful event underscored the power of collaboration in advancing VCP research and support.