The Lilly and Blair Foundation

Name

The Lilly and Blair Foundation

Legal name

The Lilly and Blair Foundation

Website

https://lillyandblair.org

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Ownership category

akta.pro rank

Product category

Rare Disease Research Nonprofit Foundation

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Social Services (8300), Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Grantmaking & Philanthropic Funds (Institutional Donors) (BPADAOAB), Global Health Financing Mechanisms & Pooled Funds (HLAJAOAC)

Keywords

• Rare disease research
• Gene therapy funding
• Nonprofit foundation
• Hereditary spastic paraplegia
• Medical research grants

GTM type

B2B and B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: The Foundation is a 501(c)(3) nonprofit organization. All donations are tax-deductible within U.S. law guidelines. 100% of donations directly support SPG4 research initiatives.

Pricing tiers

Go-to-market motion1 record

Distribution channels2 records

Marketing channels5 records

Core offering

The Lilly and Blair Foundation is a 501(c)(3) nonprofit that funds and coordinates research aimed at finding treatments for childhood-onset, de novo SPG4 (hereditary spastic paraplegia type 4). Its core activities include funding gene therapy and gene editing research programs, supporting preclinical disease model development, advancing biomarker and natural history studies, awarding research grants to scientific investigators, and hosting the annual SPG4 Scientific Symposium with Boston Children's Hospital. It also runs signature fundraising events (Winter Benefit, Golf Tournament, 5K Run/Roll/Stroll) and a tiered corporate partnership program, with 100% of donations directed to research.

Product overview

The Lilly and Blair Foundation is a 501(c)(3) nonprofit organization dedicated to improving the lives of children with de novo SPG4 (hereditary spastic paraplegia type 4) by funding research, coordinating global gene therapy development, strengthening biomarker discovery, building essential disease models, and connecting the institutions driving this work. The foundation does not offer commercial products or services; instead, it operates programs focused on research grants, scientific symposia, community events (5K Run and Stroll, Golf Tournament, Winter Benefit), and partnership opportunities to accelerate treatments for childhood-onset SPG4.

Differentiator

Problem solved

Functional benefit

Products and services

• SPG4 Research Grants Program A grantmaking program that funds academic and clinical researchers working on SPG4, including gene therapy and gene editing approaches, biomarker discovery, and preclinical disease model development. The Foundation has awarded 10 research grants across its global network of 50+ partners.
• Annual SPG4 Scientific Symposium A three-day collaborative scientific symposium on SPG4 co-hosted with Boston Children's Hospital that convenes researchers, clinicians, industry partners, advocates, and families to advance therapies and improve outcomes for those living with SPG4.
• Winter Benefit Gala An annual signature fundraising gala featuring a cocktail reception, plated dinner by Tuscarora Mill, complimentary full bar, silent auction, entertainment, and exclusive event experiences. Includes individual tickets ($275) and reserved tables for 10 guests ($2,750), plus Title, Gold, Silver, Bronze, and Community sponsorship levels.
• Annual Golf Tournament One of the Foundation's four signature annual fundraising events, supporting SPG4 research. Scheduled each May as part of the Foundation's signature events calendar.
• 5K Run, Roll and Stroll An annual community 5K fundraising event for runners, rollers, and strollers supporting SPG4 research. The 2025 edition welcomed 150 participants and raised nearly $7,000, with Title, Gold, Silver, Bronze, and Community sponsorship levels available.

Quantifiable outcome

• Nearly $1 million raised for SPG4 research
• +2 more outcomes

Segments3 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Four partnerships are on record, tiered core and minor.

• Boston Children's HospitalcoreStrategic or Co-development PartnerCollaborating to host the Annual Scientific Symposium on SPG4. The symposium brings together researchers, clinicians, industry partners, advocates, and families for three days of collaboration focused on advancing therapies and improving outcomes for those living with SPG4.
• ARCO Design/BuildminorGTM or Marketing PartnerCorporate partner supporting The Lilly and Blair Foundation. ARCO Design/Build invests in strong communities and meaningful outcomes, supporting innovative research and driving measurable impact for families affected by SPG4.
• Birkby HouseminorOthersHistoric venue in Leesburg, VA hosting the annual Winter Benefit event. Provides elegant event space for the Foundation's signature fundraising gala.
• Global Research NetworkcoreStrategic or Co-development Partner50+ academic and clinical partners collaborating across institutions globally. Engages researchers across 6 continents in SPG4 research efforts.

Scale indicators10 records

Recent moves5 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Large umbrella organization supporting all rare diseases through research grants, advocacy, and patient programs — a broader incumbent that competes for the same donor and corporate-partner mindshare in the rare-disease space.
• EveryLife Foundation for Rare Diseases: Policy- and advocacy-focused rare disease nonprofit that funds translational research and convenes stakeholders — a broader incumbent operating in the same ecosystem as disease-specific foundations like the Lilly and Blair Foundation.

Direct peers

• Tom Wahlig Foundation: International HSP-focused foundation funding research and coordinating global scientific efforts for hereditary spastic paraplegia — a peer organization working on the same broader disease category.
• Charcot-Marie-Tooth Association: Patient-focused foundation funding research for a hereditary neurological disease (CMT), with a similar strategy of coordinating academic research, building preclinical models, and convening scientific symposia — directly analogous to the Foundation's SPG4 model.
• Cure SMA: Disease-specific 501(c)(3) that funds research and drug development for spinal muscular atrophy, with a comparable event-driven fundraising model and corporate partnership tiers aimed at accelerating genetic medicines — the closest structural analogue for a single-disease rare-disease nonprofit.
• Friedreich's Ataxia Research Alliance (FARA): Single-disease rare neurological disorder foundation combining research funding, scientific meetings, and patient registry work — a structurally and strategically comparable model for a focused, ultra-rare neuro nonprofit.
• Spastic Paraplegia Foundation: Nonprofit dedicated to hereditary spastic paraplegia research overall, the closest disease-area peer to the Foundation's SPG4 work and a potential collaborator/competitor for donor mindshare in the same rare condition.
• Beyond Batten Disease Foundation: Family-founded rare pediatric disease foundation that funds a multi-modality research pipeline and coordinates global academic/industry partners — very similar mission, scale, and operating model to the Lilly and Blair Foundation.

Others

• Classy (GoFundMe Pro): Online fundraising platform used by the Foundation for tax-deductible donation processing — an enabling infrastructure vendor that also serves most peer rare-disease nonprofits and is therefore a useful comparator for digital fundraising tooling.
• Boston Children's Hospital: Core strategic partner of the Foundation that co-hosts the Annual SPG4 Scientific Symposium and is a leading pediatric research institution — an enabling ecosystem participant rather than a competitor, but highly relevant given the depth of collaboration.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat3 records

Key risks5 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/the-lilly-and-blair-foundation

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The Lilly and Blair Foundation