Progeria Research Foundation Spokespeople
Merlin is an accomplished cellist and violinist, travel enthusiast, published poet and author, and graduated from Emerson College in Massachusetts in 2022 (for a glimpse into Merlin’s book success, click here). Merlin serves as a spokesperson for The Progeria Research Foundation at events including the Annual PRF Road Race, PRF’s International Scientific Workshop and in a variety of media appearances. This summer, Merlin is working with a fantastic group of kids at The Hole in the Wall Gang Camp in Connecticut. For a video background on Merlin, click here!
Born in 1995, Sammy Basso was diagnosed with Progeria at age two, and has been the spokesperson of the Sammy Basso Italian Association for Progeria since he was ten years old. In 2007, Sammy was among the first to join PRF’s clinical trials, testing the now-FDA-approved drug lonafarnib as the first-ever treatment for Progeria. In 2014, he was featured in the National Geographic docu-film “Il Viaggio di Sammy” (Sammy’s travels), which chronicled his dream trip: traveling on Route 66 in the U.S. from Chicago to Los Angeles with his parents and friend.
In 2018, Sammy graduated from Padua University with a degree in Natural Sciences and delivered a thesis on a genetic editing approach in HGPS mice. Later that year, he was awarded Knight of the Order of Merit of the Italian Republic, for his in-depth research in disabilities and his partnership with the Italian government. In 2020, Sammy became a member of the Veneto’s regional and national task force for COVID-19 information disclosure (scientific and influencer features). In 2021, Sammy graduated with a second degree in Molecular Biology with a thesis on the intersection of Lamin A and Interleukin-6, an approach for treating Progeria by targeting the toxic protein, known as progerin.
Hear from Sammy in a panel at the 2021 STAT Breakthrough Science Summit here.
Audrey Gordon, Esq.
President and Executive Director
Working closely with the Board of Directors, committees, staff and volunteers, Ms. Gordon is responsible for The Progeria Research Foundation’s financial and organizational growth, program development, and day to day management.
Ms. Gordon is a graduate of Tufts University and Northeastern University School of Law. Prior to co-founding The Progeria Research Foundation, she practiced law in both Massachusetts and Florida, specializing in civil litigation.
Locally, she is the President of the Peabody Rotary Club and serves on the Peabody Board of Registrars. Ms. Gordon has been recognized for her achievements through North of Boston’s Business and Professional Women of the Year Award for non-profit organizations, being named Community Hero by the Jewish Family Services, and receiving the Mary Upton Ferrin Award for leadership. Under her management as PRF’s founding President and Executive Director, PRF has been awarded a coveted 4-star Charity Navigator rating for the past 9 years, and PRF received Research!America’s Paul G. Rogers Distinguished Organization Advocacy Award for bringing progeria from obscurity to the forefront of successful translational research.
Ms. Gordon resides in Peabody, Massachusetts with her husband Rich Reed, daughters Nadia and Svetlana, and dogs Fred and Jack.
Leslie Gordon, MD, PhD
PRF Medical Director
Leslie Gordon is a co-founder of The Progeria Research Foundation and serves as the organization’s volunteer Medical Director. Dr. Gordon is the Principal Investigator for ongoing PRF programs for Progeria, including the PRF International Progeria Registry, Medical and Research Database, Cell and Tissue Bank, and the Genetic Diagnostics Program. She has chaired 11 National Institutes of Health-funded, international scientific meetings on Progeria. She is Professor of Pediatrics Research at Hasbro Children’s Hospital and the Alpert Medical School of Brown University and Research Scientist at Women & Infants Hospital in Providence, RI. She is a Research Associate in Anesthesia at Harvard Medical School and Senior Staff Scientist – Associate Professor at Boston Children’s Hospital.
Dr. Gordon has paved the way for finding treatments and the cure for those affected by Progeria. She was co-author on the 2003 gene discovery for Progeria in Nature, lead author of the 2012 Progeria treatment discovery study in Journal of the American Medical Association (JAMA). She has co-chaired four Progeria clinical drug trials for children with Progeria at Boston Children’s Hospital.
Dr. Gordon received her undergraduate degree from the University of New Hampshire and her Master’s and MD, PhD from Brown University.
Scott D. Berns, MD, MPH, FAAP
Chair, Board of Directors
After serving for 14 years at the March of Dimes National Office, where he was the Senior Vice President of Chapter Programs and Deputy Medical Office, in October 2015 Dr. Berns became President and CEO of the NICHQ (National Institute for Children’s Health Quality), an independent, nonprofit organization working to improve children’s health.
Scott is a board-certified pediatrician and pediatric emergency physician. He is a Clinical Professor of Pediatrics at the Warren Alpert Medical School of Brown University and Clinical Professor of Health Services, Policy and Practice at the Brown School of Public Health in Providence, RI. He earned a masters of public health from the Harvard School of Public Health with a concentration in health, policy and management, and completed a one-year White House Fellowship where he served as a Special Assistant to the U.S. Secretary of Transportation.
Scott has received the Willis Wingert Award for excellence in research in pediatric emergency medicine from the American Academy of Pediatrics, a national award from the National Perinatal Association, a public health service award from the U.S. Department of Transportation, and the 2015 Impact Award from the White House Fellows Foundation & Association.
In Memory of John Tacket, PRF’s first Youth Ambassador
16-year-old John Tacket, PRF’s first Youth Ambassador, passed away Wednesday, March 3rd, 2004. John was an incredible person who never let his condition slow him down. In between his school activities, work and passion for the drums, he welcomed talking to others, especially kids, about Progeria because he felt it was important that people be educated about it. John was a key member of the panel that announced the Progeria gene finding in April 2003 in Washington, DC. He answered reporters’ questions and commented that it was an exciting time for him and his friends. We are proud to have known John and PRF is forever grateful for his contributions in raising awareness about Progeria and the work of PRF. He was an inspiration to us all. John will be missed greatly.
Steve, Sandy, Megan, Michaela and Josh Nighbor
PRF’s Ambassador Family 2005 – January 2010
Thank you to the family of Megan Nighbor, who served as PRF’s first ambassador family. The Nighbors were true trailblazers in raising awareness and fundraising, and continue to support PRF in these important activities.