The Progeria Research Foundation Inc

“Audrey gordon who is the president is the sister of leslie gordon who is the volunteer medical director. Scott berns, who is a director and husband of leslie gordon (volunteer medical director), the brother-in-law of audrey gordon (president). The president also serves as prf's executive director. Her role as president, as with all corporate prf officers, is a volunteer position; her role as ed is a paid staff position.”

“The 990 is reviewed by the president, executive director and the treasurer.”

“Discussed at annual board meetings.”

“The ed's salary for 2024 was determined by the independent voting members after review of the duties performed and data as to comparable compensation for similarly qualified persons. There were no other compensated officers or key employees in 2024.”

“All documents are available upon request, financial statements are also available on the organization website.”

“Diagnostic testing: prf developed a diagnostic test for progeria in the wake of the 2003 gene discovery so that children, 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 the children. 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 the 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 38 different languages. The foundation edits and publishes the progeria handbook, a guide for families and health care providers of children with progeria. It is published in english and several other languages to allow its use throughout the world. The foundation maintains an international progeria registry containing centralized information on children and families living with progeria. This assures rapid distribution of any new information that may benefit the children. Prf organizes scientific conferences 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 illnesses. Clinical trials: in 2023, 15 children came to boston to undergo testing and obtain lonafarnib for the prolon 3 (lonafarnib extension) trial, which allows children 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. Of the 15 children three were nave patients. One of the children who came to boston for the prolon 3 trial also participated in a feasibility study, along with two other children. In 2024, the team continues to gather data from the ongoing clinical drug trial. In january 2021, prf reported breakthrough findings in rna therapeutics, wherein this therapy inhibited production of rna coding for the progeria disease-causing protein, progerin. Typically, rna therapeutics are liquids that are injected intravenously (directly into the vein). However, those with progeria would not be able to tolerate intravenous delivery of the required daily dosage. Thus, prf developed a subcutaneous delivery system whereby the liquid can be injected with a small needle under the skin. A 6-month study to determine the feasibility of this delivery approach for those with progeria began in 2023. The team is testing whether administration of a saline solution can comfortably be injected subcutaneously.”

“The organization has not changed its oversight process or selection process during the tax year.”