Sam Berns, age 17, was diagnosed with Progeria when he was 22 months old; a genetic disorder that results with rapid, premature aging. Progeria affects only 1 out of 4 to 8 million birhs and approximately 350 children, in the world, have this disease. His parents, both pediatricians, established The Progeria Research Foundation in 1999 to find the cause, treatment and cure. Children with Progeria live an average of 13 years.
In 2013, Sam’s story was broadcasted as a documentary film with the title: Life According to Sam. His courage and spirit moved everyone who came into contact with him. Sam also shared his life philosophy at TEDxMidAtlantic in October 2013.
“No matter what I choose to become, I believe that I can change the world.” he said in his talk at TEDx last year. “And as I’m striving to change the world, I will be happy.”
Unfortunately, this remarkable young man, who inspired millions of people, passed away on January 10,2014 at the age of 17.
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To see some beautiful stories about Sam, please check out: http://storify.com/progeria/remembering-sam-berns-10-23-96-01-10-14
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Please also watch the following TED Talk where geneticist and physician Francis Collins explains that we know the molecular cause of 4,000 diseases, but for only 250 of them, we have available treatments. He asks why it is taking so long?
In this talk titled “We need better drugs — now!” Sam was the guest of Dr.Francis Collins. Despite his difficult condition, Sam’s brief appearance on stage radiated positivity and inspiration. He was a great soul indeed.
Rest at peace dear Sam!
Watched at: “Curious Souls Get Together” 9th meeting -February 9,2014