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 2022 was determined by the independent voting members after review of the duties performed and data as to comparablecompensation for similarly qualified persons. There were no other compensated officers or key employees in 2022.”

“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. Website/public awareness: in 2019, the prf website was updated. Progeriaresearch.org provides visitors with access to the latest information on progeria research, support, and education for families and caregivers. In addition, prf's social media presence and media exposure help raise awareness of the ultra-rare disease globally. 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 2022: one final patient visit to boston took place for the 2-drug trial. As with all previous trial visits, the patient underwent a series of tests and received a new drug supply of lonafarnib which he/she will continue to take at home, as this fda-approved drug is the standard of care. Now that all patient visits have been completed, the trial team is evaluating the data to determine whether the 2-drug combination of everolimus plus lonafarnib is a more effective treatment for progeria than lonafarnib alone. In addition, four nave 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.”

“Diagnostic testing: program service expenses 96,729. Management and general expenses 0. Fundraising expenses 0. Total expenses 96,729. Medical and research database: program service expenses 79,101. Management and general expenses 0. Fundraising expenses 0. Total expenses 79,101. Printing: program service expenses 24,251. Management and general expenses 0. Fundraising expenses 9,296. Total expenses 33,547. Computer expenses: program service expenses 0. Management and general expenses 26,196. Fundraising expenses 0. Total expenses 26,196. Media expense: program service expenses 22,268. Management and general expenses 0. Fundraising expenses 0. Total expenses 22,268. Online processing fees: program service expenses 0. Management and general expenses 13,304. Fundraising expenses 0. Total expenses 13,304. Postage and shipping: program service expenses 5,557. Management and general expenses 4,958. Fundraising expenses 2,312. Total expenses 12,827. Research activities: program service expenses 4,015. Management and general expenses 0. Fundraising expenses 0. Total expenses 4,015. Dues and subscriptions: program service expenses 0. Management and general expenses 3,766. Fundraising expenses 0. Total expenses 3,766. Professional development: program service expenses 0. Management and general expenses 1,666. Fundraising expenses 0. Total expenses 1,666. Patient handbooks: program service expenses 635. Management and general expenses 0. Fundraising expenses 0. Total expenses 635.”

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