When there is no therapy for a disease and very little is even known about the disease itself, it is often the parents or caregivers who lead the charge
When a rare disease project gets mainstream attention, it’s a big deal. Exposure to a wider audience can make a huge difference for patients, caregivers, and all other members of a given disease community. So we were excited to see that Life According to Sam, the documentary that made such an impression at the Sundance Film Festival, is now showing on HBO
Life According to Sam is a documentary film that tells the story of Sam Berns, a 16-year-old afflicted by progeria, an extremely rare condition that causes young people to prematurely experience the symptoms of old age. Progeria is one of the rarest diseases in the world, occurring in about 1 in every 8 million births. There have been approximately 140 cases reported throughout medical history. It’s likely that the vast majority of people have never even heard of progeria, but that’s all changing now that Life According to Sam is garnering widespread attention. After being selected for the 2013 Sundance Film Festival earlier this year, the film made an HBO debut on October 21 as part of the network’s documentary series.
An Inspiring Story of Love and Courage
Sam, brimming with charisma and wisdom beyond his years, is profiled in an inspiring fashion. He describes his interest in a wide range of subjects, from music to science to sports. In fact, he comes across as a quite ordinary teenager, a boy with hobbies and dreams who just happens to have an ultra-rare disease.
Equally remarkable is the story of Sam’s parents, Leslie Gordon and Scott Berns, both of whom are physicians. Following Sam’s diagnosis, they founded the Progeria Research Foundation and began dedicating themselves to the cause of finding a cure for progeria. Their story is filled with both triumph and heartbreak, and the tenacity that Scott and Leslie display while pouring their efforts into the research is a testament to the true power of caregivers in the rare disease world.
When there is no therapy for a disease and very little is even known about the disease itself, it is often the parents or caregivers who lead the charge in research. That’s exactly what Scott and Leslie are doing for Sam. “People will say things like, ‘I don’t know if I could do this,’” Leslie says to the camera. “And my answer to them is ‘Yes you could! Mothers can do anything.’”
Watch the trailer for Life According to Sam, and be on the lookout for repeat broadcasts on HBO to watch the entire film.
Photo courtesy of HBO