Progeria Research Foundation Inc

What it reported doing in 2025

Diagnostic testing: prf developed a diagnostic test for progeria in the wake of the 2003 gene discovery so those with progeria, their families and medical caretakers can for the first time be given a definitive scientific diagnosis. This can translate into earlier diagnosis, fewer misdiagnoses and early medical intervention to ensure a better quality of life for those with progeria.(see schedule o for continuation)medical & research database: the database is a collection of medical records of progeria patients from all over the world. The data is rigorously analyzed to determine the best course of treatments to improve the patients' quality of life. This information is invaluable for the attending physician to guide the family through the best course of action. Database material was used to create prf's comprehensive healthcare recommendations handbook on progeria aimed at optimizing quality of life. The database was also critical in determining the primary clinical outcome parameter for past progeria clinical drug trials.prf translation program: in touch with the world. With a prominent global outreach, prf eliminates barriers of communication for patients and their families around the world. This initiative has succeeded in translating prf program and medical care materials into over 3 dozen different languages.the progeria handbook: a guide for families and health care providers of children and young adults with progeria that includes daily care recommendations and extensive treatment guidelines. It is published in english and several other languages to allow its use throughout the world.international progeria registry: consists of centralized contact and other information on children and families living with progeria. The registry provides data on patient demographics and assures rapid distribution of any new information that may benefit those with progeria.scientific conferences; prf organizes meetings that bring together scientists and clinicians from all over the world to share their expertise and cutting edge scientific data, and foster collaboration in the fight against progeria and other aging related conditions.clinical trials: in 2025, 7 children and young adults came to boston to undergo testing and obtain lonafarnib for the prolon 3 (lonafarnib extension) trial, which allows children and young adults who are unable to obtain lonafarnib in their home country to receive this life extending treatment through this trial, while also gathering important disease-related data. In 2025, the team continues to gather data from the ongoing clinical drug trial. In addition, prf collaborated with prg science & technology in a trial involving the drug progerinin. Ten children and young adults came to boston three times in 2025 to participate in the trial. One of the 10 participants one also participated in the prolon 3 trial simultaneously during one of the visits.

Financial Efficiency

• Mission deployment rate: 88.4%; rating input score 88
• Program expense ratio: 72.6%; rating input score 73
• Fundraising efficiency: $9.71 raised per $1 spent on fundraising; rating input score 35; 35th percentile among comparable filings

Transparency & Controls

• Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
• Pay-setting controls: 1 of 6 controls in place; rating input score 17
  • Compensation committee: Missing
  • Independent consultant: Missing
  • Other Form 990s reviewed: Missing
  • Written employment contract: Missing
  • Compensation survey or study: Missing
  • Board or committee approval: Pass
• Foreign activity oversight: Scored; rating input score 0
• Grant itemization coverage: Scored; rating input score 0
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 90.9%; rating input score 91; 22nd percentile among comparable filings
• Governance controls: 9 of 9 controls in place; rating input score 100
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: Pass
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: 6.6%; rating input score 47; 47th percentile among comparable filings
• Total-asset coverage ratio: 12; rating input score 90; 90th percentile among comparable filings
• Liabilities to assets ratio: 0.01; rating input score 78; 78th percentile among comparable filings
• Officer compensation ratio: 20.2%; rating input score 15; 15th percentile among comparable filings

Growth

• Program expense growth: 7.8% per year; rating input score 100; 51st percentile among comparable filings
• Revenue growth: 2% per year; rating input score 100; 16th percentile among comparable filings
• Asset growth: 26.2% per year; rating input score 100; 90th percentile among comparable filings