ALS Finding a Cure

What ALS Finding a Cure does

ALS Finding a Cure (ALSFAC) is a private nonprofit research foundation established in 2014 and operated as a program of the Leandro P. Rizzuto Foundation, a 501(c)(3) entity founded by former Conair CEO Leandro P. Rizzuto after his daughter-in-law Christie was diagnosed with ALS. Its sole mission is to fund ALS research through competitive Requests for Proposals targeting academic and clinical institutions worldwide, with nearly 45% of its budget historically directed at Target Identification and additional funding allocated to clinical trials, early diagnostics, organoid technology, and AI/NLP-based discovery. ALSFAC co-funded preclinical and Phase 2 work for Amylyx Pharmaceuticals' Relyvrio (AMX0035/ALBRIOZA), which received FDA approval on September 29, 2022 as the first new ALS drug in over five years, alongside its participation in the $20M Answer ALS multi-omics program at Johns Hopkins, Cedars-Sinai, and Massachusetts General Hospital.

The foundation's core activities are organized around three pillars: (1) research grantmaking via open RFPs and targeted co-funded programs with the ALS Association, Hop On A Cure, ALS Network, and FightMND; (2) the ALSFAC WE CARE patient and family support initiative, distributed through partner organizations including Team Gleason, Compassionate Care ALS, ALS Ride For Life, Bridging Voice, and Matt's Place Foundation across 40+ US states and 12+ countries; and (3) the ALS Scholars in Therapeutics two-year fellowship program run with the Sean M. Healey & AMG Center for ALS at MGH. The governing Executive Committee blends senior ALS scientific leadership (directors of the Healey Center, the Cedars-Sinai Regenerative Medicine Institute, the UMass Program in Neurotherapeutics, and the Houston Methodist Appel Department of Neurology) with industrial and financial executives from GE, Caterpillar, Spirit AeroSystems, and AbbVie/XOS boards.

As a grantmaking entity, ALSFAC has no commercial revenue stream; its funding is sourced primarily from the founder's personal contributions (more than $40 million cumulatively) and from co-funding partners (NFL, PGA TOUR, Travelers, The Fishman Family, The Bari Lipp Foundation for Answer ALS; ALS Association, Hop On A Cure, ALS Network, FightMND for ongoing programs). Operating reach spans the United States with explicit international RFP solicitation covering the UK, Canada, Australia, Brazil, France, India, Italy, Netherlands, Sweden, South Korea, and Hungary. Day-to-day administration runs out of a Boca Raton, Florida office staffed by the foundation Administrator.

Name

ALS Finding a Cure

Legal name

Leandro P. Rizzuto Foundation

Website

https://alsfindingacure.org

Company type

Private

Founded year

2014

Operating status

Operating

Short description

ALS Finding a Cure is a 501(c)(3) nonprofit foundation that funds ALS research worldwide through competitive grants and patient-support programs, operating as a program of the Leandro P. Rizzuto Foundation and partnering with MGH, Johns Hopkins, Cedars-Sinai, and leading ALS advocacy organizations.

Ownership category

akta.pro rank

Product category

Nonprofit ALS Research Funding

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

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

akta.pro secondary industries

Health & Medical Research Grantmaking Foundations (BPAGAKAL), Research & Science Grantmaking Foundations (BPAGAKAI), Target Identification & Validation Platforms (omics-driven, chemoproteomics, genetic validation) (HLAAAIAI), AI/ML Platforms for Drug Discovery & Experiment Optimization (HLAGAJAO)

Keywords

• ALS research funding
• Nonprofit medical research
• Clinical trial grants
• Biomedical grant programs
• Patient support services

Headquarters

HQ city

Boynton Beach

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure, Others

Revenue model

1. Donations and Charitable Contributions: ALS Finding a Cure is a nonprofit organization funded primarily through charitable donations. The Leandro P. Rizzuto Foundation (a 501(c)(3) private foundation) provides substantial funding, with founder Leandro P. Rizzuto contributing more than $40 million of personal funds to advance ALS research.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels5 records

Core offering

ALS Finding a Cure is a nonprofit research foundation that funds ALS research and patient support programs. It distributes grants to academic, clinical, and research institutions worldwide through open Requests for Proposals, targeting target identification, biomarker discovery, clinical trials, organoid technology, early diagnostics, and AI/NLP-driven ALS research. It also delivers the ALSFAC We Care patient and family support initiative and runs the ALS Scholars in Therapeutics fellowship program in partnership with Massachusetts General Hospital.

Product overview

ALS Finding a Cure is a non-profit research funding organization (a program of The Leandro P. Rizzuto Foundation) focused solely on funding ALS research to find a cure. The organization does not offer a unified software product but rather operates as a grants and programs organization, providing funding for ALS research projects, clinical trials, and patient support initiatives. Key offerings include research funding programs targeting ALS mechanisms and therapeutic development, the ALSFAC We Care patient/family support initiative, and the ALS Scholars in Therapeutics training program run in partnership with Massachusetts General Hospital. The organization funds projects across target identification, clinical trials, early diagnostics, and organoid research.

Differentiator

Problem solved

Functional benefit

Products and services

• Research Funding Programs (ALS Research Grants) Competitive grant programs that fund academic and clinical ALS research projects worldwide, with milestone-driven progress expectations; open international RFPs targeting target identification, biomarkers, early diagnostics, clinical trials, organoid technology, and AI/NLP applications.
• ALSFAC We Care (Patient and Family Support Program) Patient and family support initiative providing ALS-related resources including equipment, educational opportunities, Medicare/Medicaid assistance, communication technology, mobility support, and home renovation grants to people with ALS and their families across multiple U.S. states and countries.
• ALS Scholars in Therapeutics Program Two-year fellowship program for young investigators to gain experience in ALS therapy development, run in partnership with the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and FightMND, providing $150,000 per award per year.
• Clinical Trials Support Funding Grant funding directed toward launching new clinical and therapeutic trials covering a broad range of targets and therapeutic classes in ALS, including co-funding of Phase 2 trials with The ALS Association (e.g., ALS ACT initiative for Amylyx's Relyvrio).
• Early ALS Detection Resources and Checklist Educational resources and an early detection checklist published on alsfindingacure.org to help with early identification of ALS symptoms and timely diagnosis.
• ALS Organoid Program Grants Two-year grant awards (up to $400,000 each) advancing the application of organoid technology for ALS translational research and development; co-funded with Hop On A Cure.
• AI and NLP ALS Discovery Grants Research grants awarded to leading scientist teams to advance artificial intelligence and natural language processing approaches for ALS discovery; co-funded with ALS Network and Hop On A Cure (up to $400,000 each for up to 2 years).

Quantifiable outcome

• FDA approval of Amylyx's Relyvrio - the first new ALS drug in over five years, which demonstrated slowing of loss of function and prolongation of life
• +1 more outcomes

Named customers8 records

Segments3 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

14 partnerships are on record, tiered major, core and minor.

• ALS NetworkmajorStrategic or Co-development Partner · 1 January 2025Co-funding AI and NLP research grants for ALS discovery. ALS Network is formerly ALS Golden West and serves people with ALS and their families throughout California, Hawaii, and beyond.
• Hop On A CuremajorStrategic or Co-development Partner · 1 January 2024Partnered to award $1.5M in grant funding for ALS Organoid Program. Hop On A Cure was founded in 2022 after John Driskell Hopkins of Zac Brown Band was diagnosed with ALS.
• The ALS AssociationcoreStrategic or Co-development Partner · 16 August 2023ALS Finding a Cure and The ALS Association partnered to award $2 million in grants for early diagnostics research, and have collaborated on multiple initiatives including the Arrest ALS program and ALS ACT clinical trial funding.
• Amylyx PharmaceuticalscoreStrategic or Co-development Partner · 29 September 2022ALS Finding a Cure provided initial funding for Amylyx, which led to FDA approval of Relyvrio (AMX0035/ALBRIOZA), the first new ALS drug in over five years. ALSFAC first collaborated with Cure AD to fund preclinical toxicology studies, then partnered with The ALS Association to fund Phase 2 clinical trials through the ALS ACT initiative.
• Sean M. Healey & AMG Center for ALS at Massachusetts General HospitalcoreStrategic or Co-development PartnerPartnership for ALS Scholars in Therapeutics program - a global two-year fellowship program for young investigators. MGH serves as the lead clinical research institution for multiple ALSFAC-funded projects.
• FightMNDmajorStrategic or Co-development PartnerCo-funding partner for the ALS Scholars in Therapeutics program, supporting young investigators in developing new ALS treatments.
• Cure Alzheimer's FundmajorStrategic or Co-development PartnerCo-funded Amylyx preclinical toxicology studies that paved the way for subsequent clinical trials.
• Cedars-Sinai Regenerative Medicine InstitutemajorStrategic or Co-development PartnerLed by Dr. Clive Svendsen, Cedars-Sinai is a key partner in stem cell research, ANSWER ALS project, and organoid technology development.
• Johns Hopkins University (Robert Packard Center for ALS Research)majorStrategic or Co-development PartnerLead institution for the ANSWER ALS project - a groundbreaking initiative combining clinical data and multi-omics from iPSC lines.
• Ionis Pharmaceuticals / BiogenmajorStrategic or Co-development PartnerALSFAC funded SOD1 half-life work that contributed to the development of Tofersen, now approved by the FDA for SOD1-ALS patients.
• Eledon PharmaceuticalsminorStrategic or Co-development PartnerFunded Eledon's early clinical work for Tegoprubart (formerly AT-1501) when the drug was still with ALS TDI.
• Team GleasonminorChannel Partner/ Reseller/ DistributorPartnership to provide portable power wheelchairs to ALS patients, with grant funding to double the number of wheelchairs distributed at no cost.
• Compassionate Care ALS (CCALS)minorChannel Partner/ Reseller/ DistributorALSFAC WE CARE funding supports CCALS to serve ALS families across 42+ states with equipment, educational opportunities, Medicare/Medicaid assistance, and communication assistance.
• ALS Ride For LifeminorChannel Partner/ Reseller/ DistributorSupport for Mobility Matters Program, the only program of its kind serving Long Island and NYC metropolitan area ALS patients.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• ALS Network: Regional ALS nonprofit (formerly ALS Golden West) serving California and Hawaii. Direct co-funding partner on 2025 AI/NLP grants and active collaborator on the Answer ALS ecosystem.
• FightMND: Leading Australian nonprofit focused on motor neurone disease (the ALS equivalent outside North America). Co-funding partner on the global ALS Scholars in Therapeutics program and active in translational ALS research.
• ALS Therapy Development Institute (ALS TDI): The world's largest nonprofit biotech focused exclusively on ALS, conducting in-house drug discovery rather than purely grant-making. Highly comparable mission, disease focus, and nonprofit funding model.
• Target ALS: Nonprofit foundation funding collaborative ALS research with emphasis on target identification and biomarker discovery. Overlapping scientific agenda with ALSFAC, particularly around target identification.
• The ALS Association: The largest US nonprofit dedicated to ALS research, care services, and advocacy. Directly comparable as a peer funder and co-grantor of ALSFAC, including joint $2M early diagnostics RFP and ALS ACT clinical trial funding.
• Hop On A Cure: ALS-focused nonprofit founded in 2022 by John Driskell Hopkins. Direct co-funding partner with ALSFAC on the $1.5M organoid program and AI/NLP grants, operating in the same niche.

Regional players

• ALS Canada: Canadian ALS research and patient services nonprofit. Comparable mission and grant-making model, but focused on a single national ecosystem rather than the global RFP footprint of ALSFAC.

Emerging players

• Answer ALS: Multi-institution research initiative (Johns Hopkins, Cedars-Sinai, MGH) that ALSFAC co-funds. Operates as a research consortium rather than a stand-alone foundation, but is a key vehicle for ALSFAC grant deployment and shares scientific leadership.

Broad incumbents

• Cure Alzheimer's Fund: Disease-specific research grantmaking foundation for Alzheimer's. ALSFAC co-funded Amylyx preclinical work with Cure Alzheimer's Fund ("Cure AD"). Highly comparable as a peer nonprofit grant-making model in neurodegenerative disease.
• Muscular Dystrophy Association (MDA): Large US nonprofit funding research across neuromuscular diseases including ALS. Broader disease scope and much larger endowment, but overlapping patient population and research funding activities.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

Revenue estimate

Valuation estimate

Number of profiles

Profiles13 records

Funding overview

Funding rounds

Investors

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M&A

Investments3 records

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Frequently asked questions about ALS Finding a Cure