PRF Co-Founders Drs. Leslie Gordon and Scott Berns speak as thought leaders at CiMUS, Spain

The Center for Research in Molecular Medicine and Chronic Diseases (CiMUS) at the University of Santiago in Spain invited PRF co-founders to share their story at a special Rare Disease Day 2025 event.

Organized and moderated by PRF researcher, Dr. Ricardo Villa-Bellosta, Drs. Gordon and Berns will shared the latest research advancements impacting the field of Progeria research and the journey of bringing Progeria from obscurity to gene finding, to treatment, to global awareness and a possible cure on the horizon! They were also joined by Esther Martinez Gracia, mother to Alexandra Perault and long-time friend and supporter of PRF.

For more info on the event, click here.

The event inspired extensive media coverage, such as “The parents of Alexandra, a girl with a rare disease: “The important thing is not to give up and to take advantage of every moment”

Following her diagnosis, the family looked for options to treat the disease, and that’s when they learned about The Progeria Research Foundation (PRF), an American organization dedicated to researching progeria. Through this foundation, Alexandra was able to enter a clinical trial testing a drug called lonafarnib that does not cure the disease, but has been shown to increase patients’ life expectancy by 30%.

~Esther Martínez Gracia, Mother of Alexandra and President of the Spanish Progeria Association

(From left): David Araújo Vilar, CiMUS researcher and President-Founder of the Spanish Society of Lipodystrophies; Mabel Loza García, CiMUS Scientific Director; PRF Co-Founder and Medical Director, Dr. Leslie Gordon; Gumersindo Feijoo Costa, Representative of the University of Santiago de Compostela, Vice-chancellor’s office for Digital Transformation and Innovation; Carmen Cotelo Queijo, Representative of the Galician Government, Director of the Galician Innovation Agency; Esther Martínez Gracia, Mother of Alexandra and President of the Spanish Progeria Association; PRF Co-Founder and Board Chair, Dr. Scott Berns; Ricardo Villa Bellosta, CiMUS researcher and PRF grantee

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