The Progeria Research Foundation (PRF) is a

non-profit organization A nonprofit organization (NPO), also known as a nonbusiness entity, nonprofit institution, not-for-profit organization, or simply a nonprofit, is a non-governmental (private) legal entity organized and operated for a collective, public, or so ...

dedicated to developing treatments and, ultimately, a cure for

progeria Progeria is a specific type of progeroid syndrome, also known as Hutchinson–Gilford syndrome or Hutchinson–Gilford progeroid syndrome (HGPS). A single gene mutation is responsible for causing progeria. The affected gene, known as lamin A ( ...

, a

congenital A birth defect is an abnormal condition that is present at childbirth, birth, regardless of its cause. Birth defects may result in disability, disabilities that may be physical disability, physical, intellectual disability, intellectual, or dev ...

disorder. The Foundation was established in 1999 by the family and friends of

Sam Berns Sampson Gordon Berns (October 23, 1996 – January 10, 2014) was an American activist with progeria, an extremely rare and fatal disease that causes the body to age rapidly. Berns helped raise awareness about the disease, and he was the subject ...

, a child with progeria, including Dr. Leslie Gordon and Dr. Scott Berns, his parents, and Audrey Gordon, his aunt.Moore, Keith.
Old at Age 3: The Story of Zachary Moore
' Old At Age 3, 2007 , pp. 11–13 From their website, the Foundation's mission statement is: "To discover treatments and the cure for Progeria and its aging related disorders." In 2003, The Progeria Research Foundation helped to discover the

gene In biology, the word gene has two meanings. The Mendelian gene is a basic unit of heredity. The molecular gene is a sequence of nucleotides in DNA that is transcribed to produce a functional RNA. There are two types of molecular genes: protei ...

mutation In biology, a mutation is an alteration in the nucleic acid sequence of the genome of an organism, virus, or extrachromosomal DNA. Viral genomes contain either DNA or RNA. Mutations result from errors during DNA or viral replication, ...

that causes progeria and developed a

diagnostic test A medical test is a medical procedure performed to detect, diagnose, or monitor diseases, disease processes, susceptibility, or to determine a course of treatment. Medical tests such as, physical and visual exams, diagnostic imaging, genetic ...

for it. In 2020 the American Food and Drug Administration approved the use of

lonafarnib Lonafarnib, sold under the brand name Zokinvy, is a medication used to reduce the risk of death due to Hutchinson-Gilford progeria syndrome and for the treatment of certain processing-deficient progeroid laminopathies in people one year of age ...

in children with the disease based on research and funding provided by the Foundation. It is the first and only certified medical protocol for the disease. One of PRF's major campaigns is ''Find the Other 150'', the goal of which is to identify and diagnose as many progeria patients as possible globally.

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* Organizations established in 1999 1999 establishments in the United States Medical and health organizations based in Massachusetts Rare disease organizations {{US-health-org-stub