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An Inspiring Rare Disease Story: Life According to Sam

Posted by | 1:28pm on Friday, February 1, 2013

Another compelling family story about a rare disease has captured the interest of filmmakers. The documentary, Life According to Sam, is about Sam Berns and recently premiered at the Sundance Film Festival. Sam has Hutchinson-Gilford Progeria Syndrome (progeria), a fatal genetic condition characterized by an appearance of accelerated aging in children. An ultra-rare disease, progeria only affects an estimated 250 patients worldwide at any given time. While Sam is 16, the average life span for children with progeria is 13 years old. Sam’s parents, Leslie B. Gordon, MD, PhD, and Scott D. Berns, MD, MPH, FAAP, are both physicians, so they were in an ideal position to work to find a treatment and cure.

Like many other rare disease parents, Drs. Berns and Gordon sprang into action when their son was diagnosed in 1998 and founded the Progeria Research Foundation. Since then, the gene causing progeria has been identified and the first-ever progeria clinical drug trial is taking place. Recently, positive results for the drug, lonafarnib, were reported. To learn more, read the blog Dr. Ricki Lewis wrote about Dr. Francis Collins and the history of progeria research.

In the video below, award-winning documentarians Sean and Andrea Fine preview the film, which has received excellent reviews. Look for it on HBO.

About Eileen O'Brien

Eileen has more than 16 years of digital healthcare marketing experience. She is an opinion leader on social media and biopharma, and has been invited to speak at industry conferences and quoted in publications.

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6 Pingbacks/Trackbacks

    01 February 2013 at 12:02pm
    Inspiring documentary, Life According to Sam: http://bit.ly/XNNbnB @progeria #progeria ...
  • Eileen O'Brien
  • 01 February 2013 at 12:02pm
    @rickilewis we are on the same page writing about #progeria! I reference your blog: ...
  • Eileen O'Brien
  • 01 February 2013 at 2:02pm
    “@EileenOBrien: @rickilewis we are on same page writing about #progeria! blog: http://bit.ly/XNNbnB ” Thx 4 blogpost! ...
  • Progeria Research
  • 02 February 2013 at 12:02pm
    #rarediseases : “An Inspiring Rare Disease Story: Life According to Sam” on Siren Song: ...
  • OrpanDruganaut Blog
  • 04 February 2013 at 5:02pm
    Read about “An Inspiring Rare Disease Story: Life According to Sam” on Siren Song: http://bit.ly/Yp4b6w ...
  • OrpanDruganaut Blog
  • 01 April 2013 at 10:04am
    RT @orphandruganau: Read about "An Inspiring Rare Disease Story: Life According to Sam" on Siren Song: http://t.co/lvergsM0 ...
  • @Progeria
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