Barb co-founded Cure MAPT FTD in 2023 after her family’s decades-long struggle with FTD was brought to national attention in The New York Times Magazine cover story “The Vanishing Family,” by best-selling author Robert Kolker. What began as a personal battle has become her life’s calling: to fight relentlessly for families living with the brutal reality of genetic FTD and to accelerate the path toward a cure.
A seasoned leader with more than twenty-five years of experience across the public, private, and nonprofit sectors, Barb has built a career at the intersection of public relations, policy, real estate, community health, and strategic partnerships.
Barb brings a personal sense of urgency and purpose to Cure MAPT FTD. She shares her leadership, partnership-building, and fundraising expertise with a fierce determination fueled by both love and loss. Her commitment to finding a cure is rooted in profound personal experience: Barb's mother and six of her eight siblings lost their personalities, independence, and livelihoods to FTD by age 55. As a matter of genetic chance, Barb did not inherit the autosomal-dominant MAPT mutation that causes FTD - an accident of fate she carries with equal parts gratitude and grief.
Though she knows it may be too late to save her siblings, Barb has pledged her life’s work to protect the next generation, including her nieces and nephews, many of whom face the same devastating risk of getting FTD, if a cure isn’t found. For her, this is not abstract advocacy - it is a race against time.
With two decades of firsthand experience navigating FTD and a professional background in corporate public relations, nonprofit leadership, and strategic partnership development, Barb understands the needs of both the patient community and the important role patient advocacy plays in the research ecosystem. She is committed to driving meaningful, life-changing outcomes for the MAPT FTD community.
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