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Worldwide Coverage Promotes Public Awareness and Scientific Progress
Since the 2003 gene discovery, PRF’s story has appeared on CNN, Primetime Live, The Today Show, in Time Magazine, People magazine, The New York Times, and dozens of other media outlets that have a keen interest in Progeria and PRF’s work. This has led to more children being diagnosed earlier, so they get proper medical care and enter our programs, and more scientists becoming involved. This is how the research field of Progeria mushrooms, as we see more children identified and more high-level scientists producing data that will help to better understand Progeria and develop treatments in the future. Read below for excerpts from these major media stories, and about the latest scientific breakthroughs, and click here for highlights from just a few of the many media outlets with a keen interest in Progeria and PRF’s work.
The family of Sam Berns confirmed today that he passed away Friday evening, January 10, due to complications from Progeria.
Sam, age 17, was diagnosed at 22 months of age with Progeria. His parents, Drs. Leslie Gordon and Scott Berns, established The Progeria Research Foundation in 1999 to find the cause, treatment and cure. Children with Progeria live an average of 13 years.
In 2013, HBO Documentaries broadcast the story of Sam Berns in Life According to Sam , and his courage and spirit moved everyone who came to know him personally or was inspired by his story. Sam also shared his life philosophy at TEDxMidAtlantic in October 2013.
The entire PRF community mourns the loss of this remarkable young man who not only inspired PRF's creation, but also touched millions of people worldwide.
The family requests privacy at this time. Expressions of sympathy and support may be expressed using #prfsam on Twitter and The Progeria Foundation Facebook page and/or directed to The Progeria Research Foundation at P.O. Box 3453, Peabody, MA 01961-3453.
Sam G. Berns 10/23/96 - 01/10/14
Sam Berns, the inspiration behind the founding of PRF, passed away Friday evening, January 10, due to complications from Progeria. The outpouring of support and tributes to this remarkable young man who touched millions of people worldwide is astounding.
On behalf of the Berns family, The Progeria Research Foundation thanks those who knew or were inspired by Sam Berns for their outpouring of support following his passing away on Friday. The messages, stories and tributes in Sam’s honor will vastly contribute to his legacy of courage and hope for years to come. The remarkable response expressed over the past two days makes it clear that Sam has touched many lives.
What he has taught all of us can be best summed up by what he shared at the TEDxMidAtlantic event in October 2013:
“Being brave isn’t supposed to be easy, but for me, it is the key way to keep moving forward.”
Friends, family and the public are invited to funeral services to be held on Tuesday, January 14 at 10:30 a.m. at Temple Israel, 125 Pond Street, Sharon, Massachusetts. No cameras, recordings, press, or reporting during the service please. Please check www.tisharon.org or www.brezniakrodman.com to confirm location of services.
Remembrances may be made to The Progeria Research Foundation, P.O. Box 3453, Peabody, MA 01961-3453, www.progeriaresearch.org.
While the family is quite moved by the public response, they wish to maintain their privacy during this difficult time. All media inquiries should be directed to Frannie Marmorstein, firstname.lastname@example.org, 202-587-2536, or Megan Lustig, email@example.com, 202-587-2586.
Did you miss the HBO premiere of Life According to Sam? Now you can watch it any time ON DEMAND! See Sam and his parents (PRF co-founders) Leslie and Scott in this riveting documentary about love, life and hope for children with Progeria. Tune in and watch the film everyone is talking about!!
October 15, 2013
Watch The Katie Show!
As if this month wasn’t exciting enough, on Tuesday, Oct. 15, Sam, his parents (PRF co-founders) Leslie and Scott, and the Directors of Life According to Sam will be the leading story on Katie Couric’s daytime show! Tune in for this exciting look into the movie and PRF’s founding family!
October 24, 2013
WE DID IT!
After seeing Life According to Sam, our generous friend Robert Kraft issued a Matching Gift Challenge to help Sam and his friends, up to $500,000 from October 8-23rd to jump-start our $4 million campaign for the triple trial. Thanks to thousands of generous people, we raised $678,262. With the Kraft Challenge match that's nearly $1.18 million so that more children can participate in our clinical trials, and more research can go into finding the cure. THANK YOU THANK YOU THANK YOU!
April 12, 2014
Join us in Cambridge, MA for Night of Wonder 2014: Lights, Camera, CURE!
Held just once every two years, it’s time for PRF’s amazing, signature gala. PRF is making tremendous advances toward a cure for Progeria. You can help get us there faster by supporting Night of Wonder.
July 30, 2013: Check out PRF’s Latest Newsletter!
Enjoy this 20-page edition that highlights the expansion of the Triple Trial, our recent workshop, funded research projects, past and upcoming events, and lots more!
April 24, 2013
PRF’s 2013 Scientific Workshop
April 24 – 26, 2013 in Bethesda, MD: “Hand in Hand: Basic & Clinical Science Working Together Toward the Cure” was held in Bethesda, MD. A record number of clinicians and researchers gathered from all over the world to share the latest data, and set the stage for future efforts to get us to treatments and the cure.
Don't miss Life According to Sam
If you missed Life According to Sam on HBO, or want to see it again, now you can watch it any time ON DEMAND. See Sam and his parents (PRF co-founders) Leslie and Scott in this riveting documentary about love, life and hope for children with Progeria.
Special Edition Newsletter!
Enjoy this 8-page piece that provides more details on the clinical trial and is dedicated to all the courageous children and their families who helped make it possible.
The Next Phase…
We’ve come so far in such a short period of time. But FTIs are a treatment, not a cure. PRF is using the knowledge gained from this trial to push research forward, testing other drugs in larger, more costly clinical trials. With our proven, fast-paced record of success and your support, Together, We WILL Find The Cure. DONATE NOW to help children with Progeria lead longer, healthier lives.
A Special Thank You…
The wonderful news of an effective treatment is being heard around the world, as families, researchers, and PRF supporters celebrate this historic milestone. We pay tribute to the many wonderful people and organizations that helped make this day possible.
The World Learns of Progeria Treatment
News of the first-ever treatment for Progeria is spreading around the globe, with dozens of media outlets reporting on this remarkable advancement. Click here to get to links on dozens of articles, radio clips and TV airings!
Click here to read our special newsletter on the findings.
September 24, 2012
WE DID IT! First-ever Treatment for Progeria Discovered!!
History has been made, with every child in the first-ever Progeria clinical drug trial showing improvement in one or more areas of their condition, proving that the FTI drug lonafarnib is the first known, effective treatment for children with Progeria.