By using this site, you agree to the Privacy Policy and Terms of Use.
Accept
Health Works CollectiveHealth Works CollectiveHealth Works Collective
  • Health
    • Mental Health
  • Policy and Law
    • Global Healthcare
    • Medical Ethics
  • Medical Innovations
  • News
  • Wellness
  • Tech
Search
© 2023 HealthWorks Collective. All Rights Reserved.
Reading: An Inspiring Rare Disease Story: Life According to Sam
Share
Notification Show More
Font ResizerAa
Health Works CollectiveHealth Works Collective
Font ResizerAa
Search
Follow US
  • About
  • Contact
  • Privacy
© 2023 HealthWorks Collective. All Rights Reserved.
Health Works Collective > News > An Inspiring Rare Disease Story: Life According to Sam
News

An Inspiring Rare Disease Story: Life According to Sam

Eileen O'Brien
Eileen O'Brien
Share
2 Min Read
SHARE

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.

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.

More Read

Image
A More Positive Outlook on Provider Consolidation
More Medical Monopoly-Yes, Medical Bills Are Killing Us!
9 Mistakes To Avoid When Using Probiotics Supplements
Revolution in Lab Testing: Theranos
Patients’ Health Data Rights and Precision Medicine

TAGGED:progeria
Share This Article
Facebook Copy Link Print
Share

Stay Connected

1.5kFollowersLike
4.5kFollowersFollow
2.8kFollowersPin
136kSubscribersSubscribe

Latest News

Epidemiological Health Benefits
Personal and Epidemiological Health Benefits of Blood Pressure Management
Health
October 13, 2025
Traumatic Brain Injuries
Understanding Traumatic Brain Injuries: What Families Need to Know
Policy & Law
October 10, 2025
Remote Monitoring touchpoints
Remote Monitoring Touchpoints Patients Will Actually Follow
Technology
October 9, 2025
dental care
Importance of Good Dental Care for Health and Confidence
Dental health Specialties
October 2, 2025

You Might also Like

Hospitals Competing for Patients

February 4, 2012

Dr. Kevin Campbell Talks About Sudden Deaths in Young Athletes

January 12, 2013
kratom
News

Local Kratom Shopping: Tips & Tricks for Buying Near You

January 17, 2024
Medical RecordsNewsSocial MediaTechnology

Dealing With A Health Crisis? Avoid Medical Identity Theft With These Tips

July 25, 2019
Subscribe
Subscribe to our newsletter to get our newest articles instantly!
Follow US
© 2008-2025 HealthWorks Collective. All Rights Reserved.
  • About
  • Contact
  • Privacy
Welcome Back!

Sign in to your account

Username or Email Address
Password

Lost your password?