The Lilly and Blair Foundation’s Annual Golf Tournament and Dinner is more than just a day on the green—it’s a powerful opportunity to rally community support around groundbreaking research that could change the future for children living with a cruel and progressive disease.

Founded by two local families in Oakton, Virginia, The Lilly and Blair Foundation was born out of an unimaginable coincidence: two little girls, diagnosed just weeks apart, with the exact same ultra-rare and life-altering genetic mutation—de novo SPG4. This neurological condition causes progressive paralysis and can quickly escalate to affect core strength, arm function, speech, and even cognition. It is often likened to ALS in children.

With fewer than two dozen known cases of this specific mutation worldwide, our foundation is laser-focused on fast-tracking treatments—and there's real momentum. We’re currently funding a mutation-agnostic gene therapy project at Boston Children’s Hospital and UMass that could help not only Lilly and Blair but potentially tens of thousands impacted by SPG4 across the globe, today and into the future.

Our Golf Tournament serves as one of our flagship fundraising events. Proceeds directly support this $3 million research initiative, which—if fully funded—could begin clinical trials within just 2–3 years. This is an urgent window of hope, and your support can help us seize it.

Why Donate an Item?

Your auction donation—whether it's a product, service, experience, or gift certificate—will be showcased to a passionate and engaged audience both in person and online. With local families, community leaders, and corporate sponsors in attendance, this is a great way to promote your business while making a tangible impact.

Every item helps us get one step closer to rewriting the future for children like Lilly and Blair—and so many others.

Thank you for considering a donation. Together, we can accelerate research, raise awareness, and bring real hope to families facing the unthinkable.

To learn more, please visit: www.lillyandblair.org