How often does a PR firm get to see a client’s courage, brilliance and ingenuity come to life in a poignant documentary film, for the entire world to see? That enviable scenario is our good fortune here at Spectrum, as we eagerly anticipate the debut of HBO Documentaries’ LIFE ACCORDING TO SAM, on Monday, October 21 at 9 p.m. ET/PT.
The subject of LIFE ACCORDING TO SAM is Sam Berns, a 16-year-old boy who has a rare and fatal childhood, rapid-aging disease called Progeria. Though part of the Progeria diagnosis is “failure to thrive,” there are few people who thrive quite like Sam, as ESPN.com writer Rick Reilly observes in his touching piece about Sam and his friend NFL New England Patriots owner Robert Kraft.
Just as Robert Kraft did, we at Spectrum fell in love with Sam 10 years ago. And as they tell the story about the film, sports journalists, science writers, film critics and top talk show hosts are taken with Sam’s wit and determination, and the relentless drive of his parents to discover a medical breakthrough to help him. Sam charmed Katie Couric and her audience earlier this week, where he was joined by Sean Fine and Andrea Nix Fine, Academy Award®-winning filmmakers he hand-picked to make the film. The Los Angeles Times review of LIFE ACCORDING TO SAM captured the loving family’s desire to lead as “normal” a life as possible.
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Spectrum with the Berns family at the October 8 HBO premiere of Life According to Sam in New York City. From left: Frannie Marmorstein, Christine Seng, John J. Seng, Sam Berns, Dr. Leslie Gordon, Dr. Scott Berns, Audrey Gordon
We at Spectrum first met Sam when we helped announce the discovery of the Progeria gene. It was an exciting moment for him and his parents, Dr. Scott Berns and Dr. Leslie Gordon, who founded the Progeria Research Foundation when their son was diagnosed at the age of two and they realized there was no cure or treatment and no research to find one. Who better to pursue a cure for Progeria than the dedicated physician parents of a precious boy with so much potential? NIH Director Francis Collins also joined the National Press Club announcement, then as Director of the National Human Genome Research Institute and senior author of the publication in NATURE announcing the discovery of the mutation in the LMNA gene, causing Progeria.
Spectrum’s pro bono efforts on behalf of the Progeria Research Foundation have for the past decade yielded worldwide media attention for its research progress, first-ever Progeria treatment clinical trial, and awareness about Sam and children like him.
Progeria is extremely rare. With an incidence of 1 in 4 million to 8 million newborns, it’s estimated that there are just 200 to 250 children living with the disease worldwide. Through a global communications campaign by Spectrum and its GLOBALHealthPR partners, the Progeria Research Foundation identified dozens of additional children with Progeria, which led to 25 children from 16 countries participating in the Progeria clinical trial.
LIFE ACCORDING TO SAM stories, blogs, posts, Tweets and public service announcements are flooding the news columns, airwaves and cyberspace this week. Those of us at Spectrum who have known Sam since he was six years old look on in awe at the remarkable young man he has become and how through this film he will touch the world’s hearts as completely as he’s touched ours.
To support the Progeria Research Foundation’s goal to find a cure, click here.
Image may be NSFW.
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