The Progeria Research Foundation Inc.

“Audrey gordon who is the president is the sister of leslie gordon who is the volunteer medical director. Barbara gordon who is the clerk is the mother of audrey gordon who is the president and 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) and son in law of barbara gordon (clerk).”

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

“Discussed at annual board meetings.”

“The president's salaries for 2019 were 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 2019.”

“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.”

“Diagnostic testing: program service expenses 84,612. Management and general expenses 0. Fundraising expenses 0. Total expenses 84,612. Medical and research database: program service expenses 80,263. Management and general expenses 0. Fundraising expenses 0. Total expenses 80,263. Media expense: program service expenses 71,638. Management and general expenses 0. Fundraising expenses 0. Total expenses 71,638. Postage and shipping: program service expenses 16,267. Management and general expenses 6,303. Fundraising expenses 15,586. Total expenses 38,156. Printing: program service expenses 31,149. Management and general expenses 787. Fundraising expenses 0. Total expenses 31,936. Computer expenses: program service expenses 0. Management and general expenses 21,517. Fundraising expenses 0. Total expenses 21,517. Patient handbooks: program service expenses 16,541. Management and general expenses 0. Fundraising expenses 0. Total expenses 16,541. Online processing fees: program service expenses 0. Management and general expenses 11,491. Fundraising expenses 0. Total expenses 11,491. Dues and subscriptions: program service expenses 0. Management and general expenses 2,006. Fundraising expenses 0. Total expenses 2,006. Professional development: program service expenses 0. Management and general expenses 1,511. Fundraising expenses 0. Total expenses 1,511.”

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