← Back to US Funders Directory

The Progeria Research Foundation Inc

Annual Giving
$9.1M
Grant Range
$75K - $0.1M

The Progeria Research Foundation Inc

Quick Stats

  • Annual Giving: Approximately $9.1 million in total grants funded since 1999 (85 grants to date)
  • Total Assets: $48,028,500 (FY 2024)
  • Grant Range: $75,000 - $100,000 per year
  • Grant Duration: 1-3 years depending on award type
  • Geographic Focus: International (18 U.S. states and 14 countries funded)
  • Charity Navigator Rating: 4 stars (100% score)

Contact Details

Overview

The Progeria Research Foundation (PRF) was founded in 1999 by Dr. Leslie Gordon, Dr. Scott Berns, and Audrey Gordon after their son/nephew Sam was diagnosed with Hutchinson-Gilford Progeria Syndrome (HGPS) at 22 months old. PRF is the only nonprofit organization in the world solely dedicated to finding treatments and the cure for Progeria, a rare fatal genetic condition causing rapid aging in children who typically die of heart disease at an average age of 14.

Since inception, PRF has provided over $9.1 million to fund 85 research grants across 18 U.S. states and 14 countries. The foundation's research has been transformative: publications increased from approximately 2 per year to over 130 annually, with roughly half receiving PRF support. PRF's efforts led to the discovery of the LMNA gene mutation in 2003 and the development of Zokinvy (lonafarnib), the first and only FDA-approved treatment for Progeria in November 2020. PRF has maintained a 4-star Charity Navigator rating for ten consecutive years, with 77.45% of expenses directed to program activities.

Funding Priorities

Grant Programs

Innovator Awards: Up to $75,000/year for 2 years

  • Designed for investigators embarking on new lines of Progeria investigation
  • Aim is to generate preliminary data competitive for longer-term NIH or other agency funding

Established Investigator Awards: Up to $100,000/year for up to 3 years

  • For senior investigators established in Progeria research or a directly applicable field
  • Requires major grant experience (e.g., NIH RO1, Ellison Senior Scholar)
  • Principal Investigator must have submitted a manuscript on Progeria work accomplished in the first two years

Specialty Awards: Flexible funding amounts and durations

  • For smaller, technology-driven projects
  • Examples: sequencing, drug screening, obtaining cell lines (including iPSCs), antibody preparation

Priority Areas

PRF prioritizes highly translational research in three categories:

  1. Clinical Treatment Development: Projects likely to lead to clinical treatment trials within 5 years, testing compounds in progerin-producing animal or cell models
  2. Gene and Cell Therapies: Development of innovative therapeutic approaches for Progeria
  3. Disease Assessment: Evaluation of natural disease progression relevant to developing outcome measures for treatment trials

What They Don't Fund

  • Research not directly related to Hutchinson-Gilford Progeria Syndrome (HGPS) or progeroid laminopathies
  • Analyses in non-progerin-producing models (unless as comparison studies with strong justification)
  • Applicants not affiliated with 501(c)(3) institutions

Governance and Leadership

Key Leadership

Dr. Leslie B. Gordon, MD, PhD - Medical Director and Co-Founder

  • Principal Investigator for PRF programs including the International Progeria Registry
  • Associate Professor of Pediatrics Research at Brown University
  • Staff Scientist at Boston Children's Hospital and Harvard Medical School
  • Co-author on the 2003 gene discovery for Progeria (Nature)
  • Lead author of the 2012 treatment discovery study (JAMA)

Audrey Gordon, Esq. - President and Executive Director

  • Responsible for organizational growth, program development, and day-to-day management
  • Graduate of Tufts University and Northeastern University School of Law
  • Recognized with North of Boston's Business and Professional Women of the Year Award

Dr. Scott D. Berns, MD, MPH - Board Chair and Co-Founder

  • Board Certified Pediatrician
  • Clinical Professor of Pediatrics at Brown University
  • President and CEO of the National Institute for Children's Health Quality

Medical Research Committee

PRF's volunteer Medical Research Committee reviews all funding proposals through peer review. The committee has approved funding for 85 grants totaling over $9.1 million since its formation in 2000.

Scientific Advisor

Dr. Francis Collins - Former NIH Director and key contributor to Progeria research since 2000, including co-discovery of the Progeria gene in 2003

Committees

  • Executive Committee: Chair - Liza Morris; Members include Dr. Scott Berns, Audrey Gordon, Dr. Leslie Gordon, Tracy Lessor
  • Development Committee: Chair - Michelle Fino
  • Finance Committee: Members include Dr. Scott Berns, Audrey Gordon, Paula Kelly CPA, John Marozzi

Application Process & Timeline

How to Apply

PRF restructured its grant program in 2024, replacing the biannual call for applications with two pathways:

1. Proactive Pathway

  • PRF identifies specific research needs and actively recruits laboratories best suited to address those priorities
  • Researchers are approached by PRF directly

2. Investigator-Driven Pathway

  • Researchers initiate contact with a brief abstract
  • Email: researchgrants@progeriaresearch.org
  • No set deadline for abstract submissions
  • Full proposals are by invitation only
  • Subject matter experts review complete proposals

Eligibility Requirements

  • Applicants must be qualified scientists with faculty appointments or equivalent
  • Must be affiliated with institutions with 501(c)(3) tax-exempt status
  • Research must test compounds in progerin-producing models

Grantee Requirements

  • All grantees must present their work at each PRF workshop taking place during their funding period (including any approved no-cost extension period)
  • PRF workshops are held every other year
  • Next Scientific Workshop: October 2025 in Cambridge, MA

Decision Timeline

  • Decision timeframes vary based on the invitation-only review process
  • Subject matter experts review full research proposals
  • There is no fixed cycle; the process is ongoing

Application Success Factors

Research Focus Alignment

PRF specifically seeks projects that:

  • Are likely to lead to clinical treatment trials within 5 years
  • Test compounds in progerin-producing animal or cell models
  • Address vascular dysfunction, cardiovascular disease, progerin protein clearance, or DNA repair mechanisms
  • Build on existing Progeria research, including the approved therapy Zokinvy (lonafarnib)

Demonstrated Expertise

Successful applicants often:

  • Have prior experience in relevant fields (aging, laminopathies, cardiovascular research)
  • Can demonstrate how their work directly applies to Progeria
  • For Established Investigator Awards: have major grant experience (NIH RO1, Ellison Senior Scholar, etc.)

Recent Funded Topics as Examples

  • Vascular calcification mechanisms and therapeutic approaches
  • Small molecule development to reduce progerin levels (PROTACs)
  • Chronic inflammation and progerin production in the gut
  • Base editing treatments for HGPS
  • Novel therapeutic compound identification
  • Stem cell therapies

Networking Opportunities

  • Attend PRF's biannual Scientific Workshops to present research and collaborate
  • Next workshop: October 2025 in Cambridge, MA
  • PRF has co-sponsored 11 scientific workshops with NIH

Key Takeaways for Grant Writers

  • Invitation-only process: There is no public open call. Initial contact via researchgrants@progeriaresearch.org with a brief abstract is the first step for investigator-driven applications
  • Translational focus: PRF prioritizes research likely to lead to clinical trials within 5 years
  • Progerin models required: Research must test compounds in progerin-producing models
  • 501(c)(3) affiliation required: Only applicants from tax-exempt institutions are eligible
  • Workshop participation mandatory: All funded investigators must present at PRF's biannual workshops
  • Well-funded foundation: With over $47 million in assets, PRF has substantial resources for meaningful grants ($75,000-$100,000/year)
  • Strong scientific network: PRF has partnerships with NIH, Boston Children's Hospital, and leading research institutions worldwide
  • Active clinical translation: PRF's research led to the first FDA-approved Progeria treatment (Zokinvy), demonstrating commitment to translational outcomes

References

← Back to US Funders Directory