KING OF PRUSSIA, PA — The Association for Frontotemporal Degeneration has appointed healthcare executive Rachel Biblow as chief executive officer, positioning the organization to build on nearly two decades of growth in research, advocacy and family support programs focused on frontotemporal degeneration.
Biblow assumed the role in May, succeeding Susan L-J Dickinson, who led the organization for 18 years and helped establish AFTD as a leading national resource for individuals and families affected by the disease.
The leadership transition comes as research into frontotemporal degeneration, or FTD, continues to advance and advocacy groups push for greater awareness, improved care resources and the development of new treatments.
AFTD Board Chair Rita Choula pointed to Biblow’s experience in healthcare transformation, patient engagement and organizational leadership as key factors in her selection.
“Rachel brings both strategic vision and deep humanity to this role,” Choula stated. “She understands the importance of supporting families while also advancing innovation, research, and long-term growth.”
Before joining AFTD, Biblow worked in healthcare and nonprofit leadership roles focused on improving organizational performance and patient outcomes.
In remarks to staff, Biblow credited Dickinson with establishing a strong foundation for the organization and emphasized continuity as AFTD advances its existing priorities.
“What Susan has built is extraordinary,” Biblow noted. “Our job is to continue that great success from here.”
Biblow identified support for families, research advancement and policy advocacy as central priorities, aligning her leadership with AFTD’s 2025-2028 strategic plan, Paving the Path Forward.
“No one expects to have to find AFTD,” Biblow remarked. “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.”
Frontotemporal degeneration is a group of brain disorders that primarily affect the frontal and temporal lobes, often causing progressive changes in behavior, language and movement. The condition is one of the most common forms of dementia affecting people under age 60.
Biblow characterized the organization as entering its next chapter from a position of strength, citing growing momentum in scientific research and continued engagement from patients, caregivers, researchers and advocates working to improve outcomes for people living with FTD.
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