King of Prussia, PA, June 17, 2026 (GLOBE NEWSWIRE) -- Rachel Biblow officially began her tenure as Chief Executive Officer of The Association for Frontotemporal Degeneration (AFTD) in May 2026, bringing with her decades of experience in health care transformation, patient and family engagement, and mission-driven leadership. As she begins this new chapter alongside the AFTD community, Biblow is focused on listening, learning, and building on the strong foundation established by her predecessor, Susan L-J Dickinson, over the past 18 years.
“What Susan has built is extraordinary,” Biblow said during her introductory remarks to AFTD staff. “Our job is to continue that great success from here.”
AFTD Board Chair Rita Choula noted that Biblow’s leadership experience, collaborative approach, and passion for mission-driven work make her a natural fit for the organization’s next chapter.
“Rachel brings both strategic vision and deep humanity to this role,” Choula said. “She understands the importance of supporting families while also advancing innovation, research, and long-term growth. We are thrilled to welcome her to AFTD and excited for the future ahead under her leadership.”
Biblow believes real impact emerges when systems, people, and purpose align — with clear roles and the right supports in place. At the Outcomes Institute, that belief translated into rewarding work: strengthening organizations and improving outcomes with the people who entrust them with their lives.
This opportunity at AFTD felt like an undeniable extension of that work, a chance to make a direct and lasting difference within a mission-centered organization. What stood out most was how AFTD supports families during some of the most vulnerable moments of their lives. The growing momentum in advocacy and research aimed at developing treatments and ultimately finding a cure made the opportunity even more enticing.
“No one expects to have to find AFTD,” she said. “And yet this organization shows up in the most vulnerable spaces and times in people’s lives and offers a bright light on a path that no one chooses to walk, so it is never walked alone.” She added that she is looking forward to building relationships with stakeholders across the community to advance AFTD’s work in FTD research and advocate for policies that improve quality of life for families while accelerating scientific breakthroughs.
Looking ahead, Biblow sees tremendous opportunity for AFTD to continue advancing the awareness, support, advocacy, and research priorities outlined in the 2025–2028 Strategic Plan, Paving the Path Forward. She is energized by growing momentum in FTD research and inspired by the compassion and commitment of the AFTD community.
“This organization has long embodied the principles of person-centered care at its core. It has always started with the lived experience of people and their families willing to partner and share their expertise with leaders in FTD research, policy, and care,” she said. “We are starting at a position of strength. I am beyond excited to be part of this team at this time, and I’m grateful for it.”
PJ Lepp Association for Frontotemporal Degeneration (484) 584-0156 plepp@theaftd.org
