The Lilly and Blair Foundation

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

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.

Newly Published SPG4 Research Identifies a Targetable Disease MechanismA study by the team Drexel University published i...
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.

At National Institutes of Health (NIH) today for Rare Disease Day representing families affected by childhood-onset SPG4...
02/27/2026

At National Institutes of Health (NIH) today for Rare Disease Day representing families affected by childhood-onset SPG4.

This is not simply adult HSP presenting earlier. Yes, it is early-onset. But it’s highly penetrant and mechanistically distinct.

We are working to ensure this phenotype is understood, studied, and prioritized.

02/10/2026

There’s no better way to kick of our golf tournament than the Mega Putt. This is the moment where every golfer and participant surrounds the green to putt at the exact same time alongside Lilly and Blair.

It’s more than just a chance to win a prize - it’s a massive show of solidarity. One green, hundreds of golf balls, one singular focus: fining a cure for childhood-onset SPG4.

Will you be in the circle this year? ⛳️

Join us May 29 at or show your support from afar through sponsorship or corporate partnership. Link in bio.

We’re excited to share a meaningful step forward for childhood-onset SPG4.The Lilly and Blair Foundation is funding a ne...
02/04/2026

We’re excited to share a meaningful step forward for childhood-onset SPG4.

The Lilly and Blair Foundation is funding a new biomarker study at Boston Children’s Hospital focused on identifying blood-based biomarkers that can help move SPG4 research closer to clinical trials.

This work builds on an existing SPG4 patient cohort and longitudinal clinical data and is designed to generate insights in months, not years.

We’re grateful to our community for making this progress possible.

This isn’t just another charity golf tournament.On Friday, May 29, we return to for our 4th Annual Golf Tournament and ...
02/03/2026

This isn’t just another charity golf tournament.

On Friday, May 29, we return to for our 4th Annual Golf Tournament and Dinner.

This day brings together business leaders, friends, families, and advocates who believe children living with SPG4 deserve better and deserve it sooner.

Every registration fuels our work to accelerate research aimed at moving potential treatments toward clinical trials as quickly as possible.

This tournament sells out because it delivers more than a great round of golf.
It delivers momentum. It delivers progress.

Register now. Link in bio.

New in 2026: Year-Long Corporate PartnershipsThe Lilly and Blair Foundation is introducing a new, year-long partnership ...
01/26/2026

New in 2026: Year-Long Corporate Partnerships

The Lilly and Blair Foundation is introducing a new, year-long partnership opportunity for organizations ready to engage with our mission beyond a single event.

Corporate Partnerships offer sustained visibility across Foundation platforms, signature events, and partner-hosted fundraisers throughout the year, while helping drive progress for children and families impacted by SPG4.

Individual event sponsorships remain available, but year-long Corporate Partnerships deliver greater overall value through consistent engagement and extended impact.

Learn more at link in bio.

Thank you.Because of this community, we raised more than $200,000 in just 6 weeks to push SPG4 research forward. This to...
01/14/2026

Thank you.
Because of this community, we raised more than $200,000 in just 6 weeks to push SPG4 research forward. This total is far beyond our $40,000 match and does not include our December event.

Your generosity fuels the gene therapy work, mouse model development, biomarker studies, and collaborations that will bring treatments within reach for children with childhood-onset SPG4.

We are grateful for the momentum you have helped build and we are ready for a year of progress and possibility.

This image represents why this work matters. Each child here (and many more) are counting on the progress being built ri...
12/29/2025

This image represents why this work matters. Each child here (and many more) are counting on the progress being built right now, through research, collaboration, and sustained commitment.

Gifts made before the end of the year are doubled up to $40,000 and help determine how quickly this work moves forward in the months ahead.

Thank you for uplifting our families and helping rewrite what happens next for children with SPG4.

From our families to yours, we wish you a peaceful and meaningful holiday. This season is one of reflection, gratitude a...
12/25/2025

From our families to yours, we wish you a peaceful and meaningful holiday.

This season is one of reflection, gratitude and hope. We are deeply thankful for the community that continues to support the children and families impacted by SPG4 and for the generosity that makes this work possible.

As we gather with loved ones today, we are holding our families, our researchers, and our shared mission close.

Wishing you a warm holiday and a hopeful close to the near year.

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Clifton, VA
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