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The Leandro P Rizzuto Foundation

Annual Giving
$13.6M
Grant Range
$5K - $0.4M
Decision Time
4mo

Quick Stats

  • Annual Giving: $13.6 million (2024)
  • Success Rate: Not publicly disclosed
  • Decision Time: 3-4 months (LOI to award notification)
  • Grant Range: $5,000 - $400,000 (varies by program)
  • Geographic Focus: National and international
  • Total Assets: $49.7 million (2024)

Contact Details

Website: https://www.alsfindingacure.org

Foundation Address: 1014 Gateway Blvd Ste 105, Boynton Beach, FL 33426

Research Grant Inquiries: Submit Letter of Interest via ALS Finding a Cure website

We Care Program: Annual Call for Proposals published on website

Overview

The Leandro P. Rizzuto Foundation, established as a 501(c)(3) in 2004, operates ALS Finding a Cure®, founded in 2014 by Conair founder and chairman Leandro P. "Lee" Rizzuto as a tribute to his daughter-in-law Christie Rizzuto, who was diagnosed with ALS in 2009 at age 41 and passed away in 2019. With total assets of $49.7 million and annual giving of $13.6 million (2024), the foundation made 118 awards in 2024. The foundation's sole mission is to fund ALS research to find a cure, with a strategic focus on target identification (45% of budget), clinical trials, and patient care. The foundation gained recognition for providing initial funding to Amylyx, which resulted in FDA approval of Relyvrio in 2022, the first new ALS drug in over five years. Lee Rizzuto personally contributed over $40 million before his death in 2017, and the foundation has committed almost $31 million to programs while leveraging an additional $50 million from partner sources.

Funding Priorities

Grant Programs

1. ALS Research Grants (Primary Focus)

  • Amount: Up to $400,000 per grant
  • Duration: Up to 2 years
  • Focus: Innovative research projects leveraging AI/NLP, early diagnostics, biomarker identification, disease progression modeling, therapeutic target discovery
  • Application: Two-step process (Letter of Interest, then full proposal if selected)
  • 2025 Cycle: 3 awards available for AI and Natural Language Processing research

2. ALSFAC We Care Grants (Patient Support)

  • Amount: Varies by project
  • Focus: Financial, equipment, and emotional support for people with ALS and their families
  • Application: Annual Call for Proposals
  • Recent Recipients: Team Gleason (mobility equipment), ALS ONE (peer connection), Hope Loves Company, Compassionate Care ALS

3. Partnership Grants (Collaborative Funding)

  • Amount: $2 million (recent early diagnostics initiative)
  • Structure: Co-funded with organizations like The ALS Association and Muscular Dystrophy Association
  • Focus: Large-scale initiatives in diagnosis, biomarker development, clinical trials

Priority Areas

  • Target Identification: Understanding disease mechanisms (45% of budget)
  • Clinical and Therapeutic Trials: Broad range of therapeutic targets and classes
  • Early Diagnostics: Development of biomarkers and diagnostic tools to reduce time to diagnosis
  • AI and NLP Applications: Drug discovery, biomarker identification, disease progression modeling
  • Patient Care: Equipment, financial support, emotional support through We Care program
  • Collaborative Research: Partnerships with major ALS organizations and research institutions
  • Open Science: Pooling and sharing data (open source approach)
  • Novel Biomarkers and Diagnostics: Tools to advance therapies to clinic
  • Clinical Trial Innovation: Accelerating innovation in trial design

What They Don't Fund

  • Indirect costs above 15%: Maximum 15% indirect costs (significantly lower than typical 40-60% institutional rates)
  • Projects exceeding 2 years: Support not normally provided beyond 2-year timeframe
  • Funds to other foundations: Awardees cannot send grant funds to other foundations
  • Administrative overhead: We Care program excludes rent, utilities, IT support exceeding 15% of total
  • Research outside ALS: Exclusive focus on amyotrophic lateral sclerosis

Governance and Leadership

Board of Trustees (serve without compensation):

  • Leandro P. Rizzuto (founder, deceased 2017; formerly Chairman and co-founder of Conair Corporation)
  • Denis Rizzuto (trustee; Lee's son, husband of Christie Rizzuto who had ALS; Senior Vice President at Conair; leads We Care program)
  • Susan Rizzuto (trustee)
  • Babe Rizzuto (trustee)

Operational Leadership:

  • Denis Rizzuto: Co-leads foundation alongside Peter N. Foss; leads ALSFAC We Care program
  • Peter N. Foss: President of ALS Finding a Cure; retired from GE after 36-year career; holds BS in Chemistry from Massachusetts College of Pharmacy
  • Dr. Merit Cudkowicz, MD, MSc: Chief Medical Officer; Chief of Neurology at Mass General Hospital; Julieanne Dorn Professor of Neurology at Harvard Medical School; co-founder of Northeast ALS Consortium (NEALS); multiple awards including 2017 Forbes Norris Award and 2018 Pinnacle Award

Key Quote from Leadership: Peter Foss described their collaborative approach: "The foundation had just started before the Ice Bucket Campaign, so they reached out immediately to the ALS Association who received most of the Ice Bucket money and said, 'Let's put our money together and fund some really important critical studies that need to happen to move the field forward.' These two groups merged $10 million each in funding."

Application Process & Timeline

How to Apply

Research Grants - Two-Step Process:

  1. Letter of Interest (LOI) Submission

    • 2-page maximum
    • Submit via Box.com portal (link provided in RFP)
    • Includes project overview, team qualifications, preliminary data

  2. Full Proposal (If Selected)

    • Cover letter addressed to ALS Finding a Cure and The Leandro P. Rizzuto Foundation
    • Project Plan, Background, and Timeline (5 pages maximum)
    • Detailed budget with milestone-specific costs
    • CVs of investigative team
    • Financial Disclosure Form (NIH or institutional form)
    • Description of other related funding sources

We Care Grants:

  • Annual Call for Proposals published on website
  • Terms of Award Agreement available
  • Application instructions included in Call for Proposals document

Important Note: The foundation's 990 forms indicate it "only makes contributions to preselected charitable organizations and does not accept unsolicited requests for funds" for some discretionary grants, but ALS Finding a Cure operates formal Request for Proposals processes as described above.

Decision Timeline

2025 Research Grant Cycle (Example):

  • Letter of Interest Deadline: Friday, May 23, 2025
  • LOI Notification: July 2025
  • Full Proposals Due: Wednesday, August 6, 2025
  • Project Start Date: Wednesday, October 1, 2025

Total Timeline: Approximately 4-5 months from LOI submission to project start

Progress Reporting: Six-month interval reports required for funded projects

Success Rates

Specific success rate data is not publicly disclosed. However, the foundation made 118 awards in 2024, 98 awards in 2023, and 111 awards in 2022, indicating consistent grant-making activity. The 2025 AI/NLP RFP specified 3 awards from an open applicant pool.

Reapplication Policy

Not explicitly stated in public materials. Projects are limited to 2-year support normally, and continuation within that period requires satisfactory progress reports at six-month intervals.

Application Success Factors

What ALS Finding a Cure Values:

  1. Collaborative and Multidisciplinary Approaches: The foundation explicitly states "Prior AI/NLP experience is not required, but partnerships with computational experts are recommended" and encourages "diverse and multidisciplinary research teams."

  2. Innovation and Gap-Filling: The foundation focuses on "identifying the gaps in the scientific understanding of ALS that are preventing the development of a cure." Projects should address unmet needs in ALS research.

  3. Translational Potential: Review criteria include "Translational Potential" alongside Scientific Merit, Feasibility, and Investigative Team quality. Research should have clear pathways to clinical impact.

  4. Partnership Mindset: The foundation's guiding principles include "Partner and collaborate" and "Pool and share data (open source)." Projects demonstrating collaborative intent align with foundation values.

  5. Efficient Use of Resources: With 100% of donations going to research and a strict 15% indirect cost cap, the foundation prioritizes direct research impact over administrative overhead.

Review Criteria (2025 RFP):

  • Scientific Merit and Innovation
  • Feasibility and Approach
  • Investigative Team
  • Translational Potential

Recent Funded Projects (as examples of successful applications):

  • Dr. Erez Eitan, NeuroDex: Blood test measuring TDP-43 regulated messenger RNAs for early diagnosis
  • Dr. Roisin McMackin, Trinity College Dublin: EEG and transcranial magnetic stimulation to identify functional changes in C9orf72 mutation carriers
  • Dr. Patrick Oeckl, Ulm University Hospital: CSF peptide analysis as early ALS biomarkers in genetically at-risk individuals
  • Dr. Ghazaleh Sadri-Vakili, MGH/Harvard: Breakpoint gene fusions in blood and CSF as early biomarkers
  • Massachusetts General Hospital/Nemdx/International Centre for Genetic Engineering team: $400,000 grant for innovative diagnostic tools

The Amylyx Success Story: The foundation's early-stage support of Amylyx demonstrates their willingness to fund high-risk, high-reward research. Dr. Merit Cudkowicz introduced the Brown University graduate founders to ALS Finding a Cure, which funded critical toxicology studies enabling subsequent clinical trials. This led to FDA approval of Relyvrio in 2022, validating the foundation's approach to identifying and supporting promising early-stage research.

Key Takeaways for Grant Writers

  • Align with the personal mission: The foundation was born from Denis Rizzuto's experience watching his wife Christie battle ALS. Applications demonstrating understanding of the patient and family experience may resonate strongly, particularly for We Care grants.

  • Emphasize collaboration: The foundation consistently partners with The ALS Association, MDA, and other organizations. Proposals showing collaborative frameworks or leveraging of partner resources align with their values.

  • Budget conservatively on indirect costs: The strict 15% indirect cost cap requires careful budgeting and may require institutional negotiations. Plan accordingly and ensure your institution can accommodate this limitation.

  • Focus on actionable timelines: Two-year maximum support means proposals should demonstrate clear milestones and deliverables within this timeframe. Show what will be accomplished, not just attempted.

  • Demonstrate translational pathway: Whether basic science or clinical research, articulate how findings will move toward clinical application and patient benefit.

  • Consider AI/NLP applications: The 2025 RFP specifically seeks AI and NLP approaches, indicating strategic interest in computational methods even for applicants without prior experience in these areas (with appropriate partnerships).

  • Leverage open science principles: Proposals committing to data sharing and open-source approaches align with the foundation's stated values of pooling and sharing data.

References

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