Together We Can
Funding cutting-edge research to rewrite the future for children
battling de novo SPG4 - a swift and severe neurodegenerative disease.
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About Us
What started as two families fighting for their daughters’ future has become a leading nonprofit funding breakthrough de novo SPG4 research. Meet the team behind the mission.
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About SPG4
Understand the rare genetic mutation behind de novo SPG4 and how it causes severe, early-onset symptoms in children. Learn why these cases are so devastating—and so urgent to treat.
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Research
We fund cutting-edge science at world-class institutions to accelerate gene therapy, mouse models, small molecule drugs, ASOs, and more. See what your support is making possible.
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Donate Now
100% of your donation fuels life-changing research for children facing de novo SPG4. They deserve a future as bright as they are—and together, we can help rewrite it.
Time is not on our side, but we hope you will be.
The Lilly and Blair Foundation is dedicated to improving the lives of children with de novo spastic paraplegia through collaboration with top scientists and funding of promising research. There is currently no treatment or cure for this swift and severe neurodegenerative disease. Learn more and donate now.
Learn more about The Lilly and Blair Foundation, including our story, our mission, and how you can help rewrite the future for the incredible children battling de novo SPG4.
The Lilly and Blair Foundation's Washington Post Live interview for Rare Disease Day alongside FDA Commissioner Califf and Cure Rare Disease Founder Rich Horgan. (Feb. 2024)
The Lilly and Blair Foundation's remarks from our 2024 Golf Tournament and Dinner. (June 2024)
