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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.
April 02, 2015
Hayley Okines 1997-2015
The entire PRF community mourns the loss of one of our shining stars, Hayley Okines. Hayley was one of the first participants in the on-going progeria clinical trials. Hayley was a pioneer – and one of the reasons that we now have the first treatment for Progeria. Today we remember her tremendous courage and determination.
March 03, 2015
PRF's Facebook reaches 1 MILLION FOLLOWERS!
In a wonderful display of global support for children with Progeria, 1 million people are following PRF through its dynamic and informative Facebook page. Follow and share so everyone can be part of our quest for the cure! In recognition of this milestone and all the people Sam Berns inspired, click here for “Take the Long Way”, a special musical tribute to Sam.
December 12, 2014
Special Reflections on 2014
As the year comes to a close, we thank all of you for your tremendous support, and hope you will consider a year-end gift towards our quest for the cure.
August 16, 2014
Life According to Sam Wins Emmy, Buy & Share the DVD
Winning an Emmy for "Exceptional Merit in Documentary Filmmaking". we congratulate HBO Documentary Films and the talented team who have helped raise awareness of Progeria and PRF's work through this exceptional film. LATS continues to impact viewers with its message of love, determination and hope for children with Progeria. Check out the impressive awards list and how you can own a copy here.
May 06, 2014
Study Finds Trial Medications Increase Lifespan in Children With Progeria
In a stunning development, this first-ever study to assess whether treatments influence patient survival shows that drugs tested in PRF-funded clinical trials increase estimated lifespan of children with Progeria by at least 1.6 years.
Click here to view this exciting study.
PRF On the Move: Receives Research!America Award, Achieves Highest 4-Star Rating
Recognized in Washington DC for its “significant impact in advancing research”, and attaining the top score from the premier nonprofit overseer, PRF is thrilled to be recognized in such significant ways.
The family of Sam Berns confirmed today that he passed away Friday evening, January 10, 2014 due to complications from Progeria.
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!!
Life According to Sam Wins Peabody Award, Now Available on DVD
On the heels of winning an esteemed Peabody Award, Life According to Sam is now available on DVD. Join millions who have seen Sam and his parents (PRF co-founders) Leslie and Scott in this riveting documentary about love, life and hope for children with Progeria.
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.
May 15, 2015
ONEpossible ™ Campaign begins!
Please help us raise $200,000 by June 30th and help 5 MORE children enroll in our drug trial. You can be ONE who makes a cure POSSIBLE!