Spastic Paraplegia Foundation
The Spastic Paraplegia Foundation is a 501(c)(3) nonprofit founded in 2002 and the only organization in the Americas dedicated to finding cures for Hereditary Spastic Paraplegia and Primary Lateral Sclerosis, funding peer-reviewed research and supporting affected patients, families, caregivers, and clinician-scientists globally.
- Company typePrivate
- Founded2002
- HeadquartersO'Fallon, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Spastic Paraplegia Foundation does
The Spastic Paraplegia Foundation, Inc. is a 501(c)(3) nonprofit organization founded in 2002 and headquartered in O'Fallon, Missouri, operating as the only entity in the Americas dedicated to finding cures for Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS). The foundation funds peer-reviewed medical research through a Scientific Advisory Board of volunteer neurological scientists from institutions including Stanford, the University of Michigan, Penn State, and the University of Utah, and has awarded 103 research grants totaling $13,255,498 since inception, with 97% of donations flowing directly to research grants.
The foundation's core operational assets are the SP-CERN network of ten research centers across North America (supported in part by an $8.4 million NIH grant), the annual SPF HSP/PLS conference (23rd edition scheduled for June 2026 in St. Louis), the Synapse newsletter, physician and physical therapist directories, co-sponsored support groups (with the ALS Association for PLS), an ambassador program, and global awareness programming such as World HSP & PLS Day, which in 2025 engaged organizations from 15 countries. The board comprises 5 officers and 8 members, the majority of whom are themselves affected by HSP or PLS, with executive support from a consulting past president, attorney, and medical advisor.
Revenue is generated through individual donations (including monthly recurring giving and an annual matching program of up to $300,000), memorial and estate gifts, conference registration fees tiered from $125 to $350, corporate sponsorships (Regions Bank, Colin Foundation, Cionic, Chick-fil-A, among others), and event-based fundraising including 5K Run/Walk/Roll events, auctions, and third-party partner campaigns such as the Pampered Chef collaboration. The organization is entirely volunteer-operated with no paid staff, and partnerships with Global Genes, Patient Worthy, Euro-HSP, AEPEF (Spain), and ASPEC Brasil extend its international reach.
Spastic Paraplegia Foundation firmographics
Firmographics- Name
- Spastic Paraplegia Foundation
- Legal name
- Spastic Paraplegia Foundation, Inc.
- Website
- https://sp-foundation.org
- Company type
- Private
- Founded year
- 2002
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- The Spastic Paraplegia Foundation is a 501(c)(3) nonprofit founded in 2002 and the only organization in the Americas dedicated to finding cures for Hereditary Spastic Paraplegia and Primary Lateral Sclerosis, funding peer-reviewed research and supporting affected patients, families, caregivers, and clinician-scientists globally.
- Ownership category
- akta.pro rank
Spastic Paraplegia Foundation industry classification
Industry- Product category
- Rare Disease Research Funding
- NAICS
- Voluntary Health Organizations (813212), Individual and Family Services (6241), Grantmaking and Giving Services (81321)
- SIC
- Services-Social Services (8300), Services-Commercial Physical & Biological Research (8731), Services-Misc Health & Allied Services, Nec (8090)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industries
- Health & Medical Research Grantmaking Foundations (BPAGAKAL), Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM), Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
Keywords
Where Spastic Paraplegia Foundation is headquartered
LocationHeadquarters
- HQ city
- O'Fallon
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Spastic Paraplegia Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
Revenue model
- Donations and Charitable Contributions: Individual donations, memorial gifts, estate planning gifts, and corporate donations constitute the primary revenue stream. 97% of donations go toward research grants.
- Conference Registration Fees: Registration fees for the annual SPF HSP/PLS conference ranging from $125-$350 per person depending on timing and in-person vs virtual attendance.
- Corporate Sponsorships: Corporate sponsors provide financial support in exchange for recognition at events and in marketing materials. Sponsors include Regions Bank, Colin Foundation, Chik-fil-A, Cionic, and others.
- Fundraising Events and Auctions: Revenue generated from events such as golf tournaments, raffle baskets, live auctions, and third-party fundraisers like Pampered Chef partnerships (30% contribution on sales over $650).
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Other | Pay-as-you-go | In-person conference attendance with full access to scientific forum and patient/family sessions |
| Subscription | Annual | Annual year-end matching donor program |
| Subscription | Monthly | Recurring monthly giving program |
Go-to-market motion1 record
Distribution channels4 records
Marketing channels12 records
Spastic Paraplegia Foundation product offering
Product offeringCore offering
The Spastic Paraplegia Foundation is a 501(c)(3) nonprofit that funds peer-reviewed medical research grants aimed at finding cures for Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS). It also operates the SP-CERN research network of ten centers of excellence, hosts an annual patient/family conference, maintains support groups and an ambassador program, and publishes educational resources for affected patients and caregivers.
Product overview
The Spastic Paraplegia Foundation is a nonprofit 501(c)(3) organization dedicated to funding medical research to find cures for Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS). The foundation operates a grant-based research funding program reviewed by a Scientific Advisory Board, maintains the SP-CERN research network of ten centers of excellence, organizes annual conferences for patients and families, publishes the Synapse newsletter, and provides community support through ambassador programs and support groups. The organization also conducts patient surveys, maintains informational resources and directories, and hosts annual awareness events including World HSP & PLS Day.
Differentiator
Problem solved
Functional benefit
Quantifiable outcome
- 103 research grants funded totaling $13,255,498
- +2 more outcomes
Companies that use Spastic Paraplegia Foundation
Customer profileNamed customers2 records
Segments4 records
Spastic Paraplegia Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Spastic Paraplegia Foundation partnerships and signals
Strategic signalPartnerships
Eleven partnerships are on record, tiered core and minor.
- Global GenescoreRare disease advocacy organization partnering to support the HSP/PLS community and raise awareness for rare neurological conditions
- Patient WorthyminorPatient advocacy platform helping amplify stories and raise awareness for rare disease conditions including HSP and PLS
- Euro-HSPcoreEuropean counterpart organization dedicated to hereditary spastic paraplegia research and patient support, collaborating on international awareness initiatives
- AEPEF (Spanish Association of Familial Spastic Paraparesis)coreSpanish national organization supporting families affected by hereditary spastic paraplegia, collaborating on research and awareness efforts
- ASPEC BrasilcoreBrazilian patient organization for hereditary spastic paraplegia, working with SPF on international research collaboration and awareness
- AlinkercoreMobility equipment company offering SPF promotional discounts ($200 off Alinker, $50 donated to SPF) through the Watch Me Walk partnership, stemming from the Watch Me Walk theater performance about disability and mobility
- Cadence ShoesminorSpecial offer partnership providing $10 off purchases for SPF visitors, with donated gift certificates for conference raffles
- Pampered ChefminorAugust fundraising campaign where SPF receives 30% contribution on group sales over $650 through unique shopping links shared with supporters
- ALS AssociationcoreCo-sponsorship of PLS Support Groups, leveraging shared expertise in motor neuron diseases and providing Zoom platform access for monthly meetings
- NIH/NCATS (National Center for Advancing Translational Sciences)coreFederal research agency supporting rare disease research; NIH awarded $8.4 million grant to fund SP Research Consortium (SP-CERN). SPF participates in annual Rare Disease Day at NIH
- Boston Children's HospitalcoreLead institution for SP-CERN network with Darius Ebrahimi-Fakhari, MD, PhD serving as Principal Investigator, directing the network's research efforts
Scale indicators7 records
Recent moves6 records
Expansion highlights6 records
Spastic Paraplegia Foundation competitors and assessment
Company assessmentDirect peers
- Friedreich's Ataxia Research Alliance (FARA): FARA funds research and supports patients with Friedreich's ataxia, a rare hereditary neurological disease. Operates a similar model of peer-reviewed grants, patient conferences, and a research consortium network — directly comparable to SPF's SP-CERN structure.
- Cure SMA: Cure SMA funds research and supports patients with spinal muscular atrophy, a rare genetic neuromuscular disease. Highly comparable operating model: small foundation, peer-reviewed grants, clinical research network, annual conference, and strong donor engagement.
- Global Genes: Global Genes is a rare disease advocacy organization that partners directly with SPF. Operates a broader rare disease umbrella model with comparable patient advocacy, awareness campaigns, and rare disease research support functions.
- Hereditary Neuropathy Foundation: HNF is a small rare disease nonprofit dedicated to Charcot-Marie-Tooth disease and related inherited neuropathies. Comparable mission, funding model, and patient community size to SPF's HSP/PLS focus.
- Charcot-Marie-Tooth Association: CMTA is a U.S.-based rare neurological disease patient organization that funds research, supports patients, and operates a clinical research network for Charcot-Marie-Tooth disease. Highly comparable structure and mission as a small rare disease research foundation with peer-reviewed grants.
- National Ataxia Foundation: NAF funds research and supports patients with hereditary ataxias, a category of rare neurological movement disorders with genetic overlap to HSP. Operates similar grantmaking, conferences, and patient support programs.
Broad incumbents
- Muscular Dystrophy Association (MDA): MDA is a large, well-established neuromuscular disease nonprofit that funds research, runs clinical care centers, and supports patients across many rare neuromuscular conditions including some with HSP overlap. Comparable research funding mission at greater scale.
- National Organization for Rare Disorders (NORD): NORD is the largest U.S. rare disease umbrella organization, supporting patient organizations across many diseases including HSP/PLS. Operates research grants, patient assistance programs, and advocacy on a much larger scale than SPF.
- ALS Association: The ALS Association is a major nonprofit that co-sponsors SPF's PLS Support Groups. While much larger and focused on ALS, it serves an overlapping patient community (PLS is in the motor neuron disease spectrum) and represents a broader incumbent in the neurological disease space.
Emerging players
- The Maddi Foundation: The Maddi Foundation is a UK-based charity focused on SPG15 research, founded by SPF board member Carina Thurgood. Highly comparable emerging organization in the HSP rare disease space with research partnerships at SITraN/Sheffield University.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks6 records
Key highlights7 records
Customer concentration
Spastic Paraplegia Foundation social profiles
Digital presenceSpastic Paraplegia Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
Spastic Paraplegia Foundation leadership team
Management profileNumber of profiles
Spastic Paraplegia Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Spastic Paraplegia Foundation M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Spastic Paraplegia Foundation
What does Spastic Paraplegia Foundation do?
The Spastic Paraplegia Foundation is a 501(c)(3) nonprofit that funds peer-reviewed medical research grants aimed at finding cures for Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS). It also operates the SP-CERN research network of ten centers of excellence, hosts an annual patient/family conference, maintains support groups and an ambassador program, and publishes educational resources for affected patients and caregivers.
Is Spastic Paraplegia Foundation a public or private company?
Spastic Paraplegia Foundation is a private company. It is currently operating.
When was Spastic Paraplegia Foundation founded?
Spastic Paraplegia Foundation was founded in 2002. It employs 1 to 10 people.
Where is Spastic Paraplegia Foundation based?
Spastic Paraplegia Foundation is headquartered in O'Fallon, United States, in the North America region.
How does Spastic Paraplegia Foundation make money?
Four revenue lines are on record. Donations and Charitable Contributions are the primary driver. The others are conference Registration Fees, corporate Sponsorships and fundraising Events and Auctions.
Who are Spastic Paraplegia Foundation's main competitors?
Direct peers on record are Friedreich's Ataxia Research Alliance (FARA), Cure SMA, Global Genes, Hereditary Neuropathy Foundation, Charcot-Marie-Tooth Association and National Ataxia Foundation. Broad incumbents are Muscular Dystrophy Association (MDA), National Organization for Rare Disorders (NORD) and ALS Association. The Maddi Foundation is listed as an emerging player.
Does Spastic Paraplegia Foundation have an API?
No public API is recorded for Spastic Paraplegia Foundation.
What industry is Spastic Paraplegia Foundation in?
Spastic Paraplegia Foundation's product category is Rare Disease Research Funding. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of BPAGAKAL, Health & Medical Research Grantmaking Foundations. Its NAICS code is 813212 and its SIC code is 8300.