Keep Moving Forward
Inspired by Sam Berns and his battle with Progeria - #prfsam
The remarkable journey of a young man’s life with Hutchinson-Gilford Progeria Syndrome, began at the tender age of just 22 months old. Born on Oct. 23, 1996 in Providence, RI, Sam Berns became an inspiration for his parents, Dr. Leslie Gordon and Dr. Scott Berns, to learn more about the genetic disease that was so limited in information. Together they created the Progeria Research Foundation in hopes of discovering treatments to slow down its progression and eventually find a cure.
The fatal genetic condition is the result of a mutation in a gene called LMNA, and causes children to age rapidly, eventually causing heart attacks and strokes. It also drastically changes their appearance while leaving their intellect intact. Unfortunately similar to many adults in their 60s and 70s, children with Progeria often pass away from heart disease. With the disease affecting just one in 4 – 8 million newborns throughout the world, the Berns family set out to raise awareness.
Their passion for educating others about the disease lead the Berns family to star in an HBO documentary “Life According to Sam.” In it, Sam and his parents share what life is like with Progeria, and how the love and strength of a family can overcome life’s obstacles. The documentary chronicles Sam’s life at just 13 years old (the average age in which most children with Progeria pass away), as he inspires the world with his true spirit and bravery.
The genetic disease recently gained even more awareness with the sad passing of Sam Berns on Jan. 10, 2014 at his home. People all over the world have shared in mourning his loss, and remembering the inspirational legacy he leaves behind. One part of that legacy is his philosophy on life which he shared at the Oct. 2013 TEDxMidAtlantic event. A portion of his philosophy was the phrase ‘keep moving forward,’ by which he bravely lived his life, and by which we can only assume his parents and the Progeria Research Foundation will continue to do as well.
To learn more about Progeria and for ways you can help spread awareness visit progeriaresearch.org.