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The Lilly and Blair Foundation: From Our Story to Theirs

This video reflects the evolution of The Lilly and Blair Foundation — from two families advocating for two little girls to a growing, global movement working on behalf of every child living with childhood-onset SPG4. What began as a deeply personal journey has become a coordinated effort across families, researchers, clinicians, and partners around the world. The focus is no longer just our story, it’s theirs. The video also features remarks from: • Dr. Darius Ebrahimi-Fakhari, Boston Children’s Hospital • Dr. Peter Baas, Drexel University Their perspectives underscore the momentum building across the SPG4 research community and the urgency behind this work. More messages and research updates from our scientific partners will be shared in the future. A $40,000 year-end match is currently in effect through December 31, doubling every donation made in support of this work. Learn more at lillyandblair.org