The Lilly and Blair Foundation

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The Lilly and Blair Foundation

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Dedicated to finding a cure or treatment for childhood-onset, de novo SPG4 - a swift and severe neurodegenerative disease.

10/20/2026

An incredible setting for an incredible evening - all for a great cause!

Join us on November 13 at the beautiful, historic Birkby House in Leesburg for a special evening of connection, celebration and community.

With its timeless elegance and beautiful surroundings, Birkby House provides the perfect backdrop for a night that’s as meaningful as it is memorable.

Only 10 days left to register! Don’t miss your chance to be part of this special evening. Reserve your tickets or table today.

10/17/2026

Spending World HSP and PLS Day with the two girls who started it all. ❤️ What began with Lilly and Blair has grown into something so much bigger than them. The Lilly and Blair Foundation

10/17/2026

Today, October 17, is World HSP & PLS Awareness Day.

Today, we join families, researchers, and organizations around the world to raise awareness of Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS), rare neurological diseases that affect movement and can lead to progressive disability.

For our Foundation, this day is especially meaningful. Childhood-onset SPG4 is rare, progressive, and currently has no approved treatment.

But awareness is only the beginning.

Over the past year, we’ve continued building a global community of families and researchers, funding promising science, and advancing multiple approaches toward potential treatments. What once felt like an impossible challenge has become a coordinated effort to change the future for children living with SPG4.

Because awareness matters. Research matters. And for children living with progressive disease, time matters.

Today, we join the entire HSP and PLS community in a shared commitment to greater awareness, continued research, and a future with better treatments.

Learn more about our mission at lillyandblair.org.

RareDisease LillyAndBlair ResearchForACure

10/12/2026

The best part of this evening has always been the people who come together to make it possible.

We’re looking forward to gathering with so many of you on November 13 for a night filled with connection, generosity and hope for what’s ahead for children with SPG4.

A limited number of seats remain - register at link in bio.

09/16/2026

What a morning! Sunday’s 5K Run, Roll and Stroll was everything we hoped it would be.

Some ran. Some rolled. Some strolled. Everyone belonged.

We are so grateful to every person who showed up, volunteered, donated, cheered and helped make the morning so special. And a huge thank you to our partners ARCO Design/Build, Birkby House, Kimley-Horn, Dana, Jordan, Morgan (PT/OT), Shipley Donuts and Kidcreate Studio Ashburn, as well as our race director Terry Thiele.

Most importantly, this community continues to remind us what’s possible when people come together around a shared purpose: moving research forward and changing the future for children with SPG4.

Thank you for being part of it!

Up next: our Winter Benefit on November 13. We hope to see you there!

09/09/2026

The evening is taking shape!
We’re thrilled to welcome Tommy McFly of NBC4 Washington as event host for our 2026 Winter Benefit: A Night to Rewrite the Future.

And the music? We have an incredible night planned with Dan Fisk and Bachelor Boys Band.

Join us Friday, November 13 at Birkby House in Leesburg for an unforgettable evening of connection, live entertainment and impact, all in support of urgently needed research for children living with SPG4.

Early Bird pricing ends September 15 and space is limited!

Reserve your tickets or table at link in bio.

08/28/2026

One extraordinary evening. One extraordinary cause.

Our 2026 Winter Benefit is coming to the historic Birkby House on Friday, November 13.

Exceptional dining. Premium complimentary bar. Live entertainment. Curated experiences. And a community coming together to accelerate treatments for childhood-onset SPG4.

Early-bird pricing is currently available. Reserve your table or tickets today.

08/12/2026

Today we are honored to recognize an extraordinary legacy gift from the estate of Nancy Josephine Cameron.

Through a generous bequest of $87,000, Nancy chose to invest in a future with greater hope for children living with childhood-onset SPG4.

Nancy's connection to this mission was deeply personal. Her great-great-niece, Nina Josephine Washburn, lives with de novo SPG4. Although Nancy never had the chance to meet Nina, she knew all about her, purchased toys for her, and looked forward to meeting her in person. Tragically, Nancy passed away just a few short days before that visit could take place.

Through her generosity, Nancy has become part of the fight for Nina's future—and for the future of every child living with SPG4.

Today, we remember Nancy with gratitude and honor the legacy she leaves behind.

08/06/2026

Some evenings are remembered because they were beautiful. Others are remembered because they changed what was possible.

On Friday, November 13, we invite you to join us at the historic Birkby House in Leesburg for an unforgettable evening benefiting The Lilly and Blair Foundation.

Enjoy exceptional dining by Tuscarora Mill, a complimentary premium bar, live entertainment, exclusive auction items and onsite experiences, and inspiring stories celebrating the remarkable progress already underway for children living with SPG4.

In just three years, this community has helped bring together researchers, physicians, families, and supporters from around the world to accelerate treatments that simply didn't exist before.

Now, we gather again—not only to celebrate that momentum, but to build what comes next.

Whether you've been part of this journey from the beginning or are joining us for the very first time, we'd be honored to welcome you.

Seating is limited. Reserve your place today.

Link in bio.

Address

Clifton, VA
20124

Website

http://LillyandBlair.org/, http://lillyandblair.org/golf, http://lillyandblair.org/partnership

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