With a documentary set to air on HBO in a matter of days, a national audience is now getting to learn who Sam Berns is.
Wednesday afternoon’s edition of Katie hosted by Katie Couric featured the former Today Show and CBS Evening News anchor interview the 16-year old Foxboro resident along with his two parents.
It was not the first time Berns and Couric have met. 10 years ago, a 6-year old Berns appeared on the Today Show.
With many viewing the show hearing of Berns story for the first time, the young 16-year old junior from Foxboro and his parents told the story of discovering the diagnosis and creating what would be the leading foundation for Progeria research.
They also got to see the optimism displayed by Berns whether it be his personality that lit up the studio or footage of Berns participating in school activities or with the FHS marching band.
“Everybody has their challenges in life and although I accept the fact that sometimes I feel dejected when I am not able to do something that there are other opportunities to do so many other activities or things that maybe some other people can’t do or can do and I just enjoy,” Berns told Couric.
With only an estimated 200-250 children living with Progeria worldwide at any given time, it became clear that there were few resources to research and find a cure for the disease. Refusing to quit, Sam’s parents, who are both doctors, formed the Progeria Research Foundation to provide the research needed to understand the rare disease.
“Once we discovered there was nothing out there for children with Progeria, I stopped everything I was doing with my residency and we started the Progeria research foundation. We really tapped into the people around us to create this organization but what we wanted to do is fill the gaps,” Sam’s mom Dr. Leslie Gordon told Couric
Since the foundation was created, the gene that causes Progeria was discovered in 2003 and the first drugs to deal with Progeria was tested as part of 2-year clinical trial. Some kids in the trial were able to gain weight, improve their bone structure, and improvements to the cardiovascular structure were seen in some children.
“The only thing we could measure is a reversal to show the drug has some effect. It’s not a cure but it’s like going from 0 to 25 (percent). It tells you we can do something about Progeria,” Gordon said.
The segment also featured an appearance by Patriots’ owner Robert Kraft who pledged to donate money to Progeria research after seeing the documentary.
“We have a young man that has set very high goals. He’s inspired me and makes you realize how precious life is and how no obstacle should stand in the way of what you want to do,’ Kraft said.
After initially offering to donate $1,000 for ever year Berns has lived, Kraft has instead decided to match up to $500,000 in donations made to the Progeria Research Foundation though his birthday on Oct. 23.
Kraft also presented Berns with the game ball from the Patriots’ win 30-23 over the Atlanta Falcons on Sept. 29