The Lilly and Blair Foundation

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The Lilly and Blair Foundation

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

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.

08/03/2026

Congratulations to Drs. Peter Baas and Emanuela Piermarini of Drexel College of Medicine on this outstanding publication in Movement Disorders.

One of the strongest signs that a field is maturing is when researchers can step back, synthesize what has been learned, and define the path ahead.

A new review published in Movement Disorders does exactly that for SPG4—bringing together the current understanding of disease biology and the therapeutic strategies now under investigation, including gene therapy, antisense oligonucleotides (ASOs), gene editing, drug discovery, and other emerging approaches.

While the review addresses SPG4 broadly, it also highlights the more severe childhood-onset, de novo forms of the disease that remain at the heart of our mission. We are honored to see The Lilly and Blair Foundation recognized among the organizations supporting this important body of work.

Every study strengthens the scientific foundation needed to accelerate meaningful therapies for people living with SPG4. Not someday. Soon.

07/21/2026

Less than two months until the The Lilly and Blair Foundation 5K Run, Roll and Stroll!

Join us on Sunday, September 13 at Clemyjontri Park (or virtually!) for a morning of community, connection, and fun for all ages.

Your registration includes:
• Timed 5K or Kids’ Fun Run
• Commemorative t-shirt
• Refreshments
• A craft and art activity provided by KidCreate Studios
• Access to one of the region’s most beloved accessible playgrounds

Whether you run, walk, roll, volunteer, or cheer from the sidelines, we’d love to have you with us.

Register today at link in bio.

07/15/2026

Today is a meaningful day for our community.

The Lilly and Blair Foundation is proud to announce $300,000 in new research funding to accelerate therapeutic development for childhood-onset SPG4.

Following review by our Grant Review Board, the Lilly and Blair Foundation selected two complementary programs focused on advancing potential treatments for children living with SPG4.

This year’s Strategic Research Grant Program attracted nine proposals from leading institutions across the United States, Canada, and Europe, reflecting the growing momentum and scientific interest surrounding SPG4 research.

The 2026 awards include:

• Gene therapy development and translation — A two-year, $150,000 award to Miguel Sena-Esteves, PhD, and colleagues at UMass Chan Medical School supporting advancement of a mutation-agnostic gene therapy strategy for childhood-onset SPG4.

• Therapeutic discovery and drug repurposing — A two-year, $150,000 award to Liang Oscar Qiang, MD, PhD, and colleagues at Drexel University College of Medicine supporting therapeutic discovery efforts and evaluation of potential FDA-approved treatment candidates using patient-derived disease models.

Together, these awards represent another important step toward accelerating treatments for children and families affected by SPG4.

We extend our sincere appreciation to all investigators who submitted proposals and to the reviewers who contributed their expertise throughout the evaluation process.

Most importantly, thank you to the families, donors, researchers, clinicians, and advocates who make this work possible.

Read the full announcement at the link in the comments.

06/04/2026

What a day. ⛳️

Because of this incredible community, our 2026 Golf Tournament was a sold out success.

From golfers and sponsors to volunteers, donors, auction supporters, and friends, hundreds of people came together with a shared purpose: creating a better future for children living with SPG4.

Every sponsorship, golfer, auction bid, raffle ticket, and donation contributed to moving research forward, strengthening our community, and accelerating progress.

To everyone who supported this event in any way, thank you. Your belief in this mission is helping turn hope into action.

But we’re not slowing down. Join us this fall as we continue rewriting the future:

5K Run, Roll and Stroll
September 13 at Clemyjontri Park in McLean, VA or Virtual

Winter Benefit: A Night to Rewrite the Future
November 13 at in Leesburg, VA

Registration, tickets and sponsorships are now available at link in bio.

Thank you for your continued support!

05/07/2026

Newly published in Brain: our research team has published the most detailed natural history study of early-onset SPG4 to date.

This landmark international study analyzed more than 200 individuals with genetically confirmed SPG4 and identified biologically distinct disease trajectories, including a severe early-onset subgroup enriched for de novo missense variants such as Arg499His.

Importantly, the findings reinforce what many pediatric SPG4 families have long experienced clinically: severe childhood-onset SPG4 is not simply “early adult SPG4.” The biology and progression can be fundamentally different.

The study also establishes a framework for genotype-informed stratification that could help improve clinical monitoring, future clinical trial design, biomarker development, and therapeutic approaches.

This is not a treatment. But it is a major step forward for the field and for the children and families living with severe SPG4.

We are proud that The Lilly and Blair Foundation helped support this research and grateful to collaborate with leading investigators and institutions around the world working to advance understanding and treatment development in SPG4.

05/05/2026

Our silent auction is coming together and it’s going to be GOOD.

From exclusive experiences to family favorites, we’re building something for everyone - and this is just a preview. But, you have to be there to bid and win!

Register now for our 4th Annual Golf Tournament and Dinner on May 29 at . Spots are filling fast. Link in bio.

Thank you to our incredible auction donors:

03/12/2026

Grab your foursome.

Our 4th Annual Golf Tournament and Dinner is coming up May 29 at , and it’s shaping up to be another incredible day on the course.

Great golf.
Great people.
A mission that matters.

Bring friends, coworkers, or clients and join us for one of the most meaningful events of the year.

Register your foursome or sign up individually today.

02/27/2026

Newly Published SPG4 Research Identifies a Targetable Disease Mechanism

A study by the team Drexel University published in Cell Reports advances our understanding of what is driving degeneration in SPG4.

Using human corticospinal motor neuron organoids carrying SPAST mutations, researchers discovered that mutant M1-spastin abnormally activates an enzyme called HDAC6.

When HDAC6 becomes overactive:
• Microtubules lose stability
• Axonal stress increases
• Neurons become vulnerable

When researchers inhibited HDAC6:
• Microtubule stability was restored in human neuron models
• Degeneration markers were reduced
• SPG4 mice showed improved gait and partial rescue of spinal cord pathology

This establishes HDAC6 hyperactivation as a disease-relevant and pharmacologically targetable mechanism in SPG4.

This is not a treatment. But it is a critical step forward.
It shows that degeneration may be modifiable and expands the therapeutic landscape beyond a single approach.

The Lilly and Blair Foundation is proud to have contributed funding to this research. Progress like this is what happens when investment, collaboration, and community align.

Momentum continues.

Address

Clifton, VA
20124

Website

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

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