Sam Berns, 1996-2014

John Seng is Founder & CEO of Spectrum and Chair of GLOBALHealthPR.

When I founded Spectrum in July 1996, I had no way of knowing that in October that same year a baby boy born to a Massachusetts couple would before too long enter my world, altering the life of my company, and before long the perspectives of anyone who crossed paths with him.

This baby’s name was Sampson Berns. His parents, physicians Leslie Gordon and Scott Berns, gave him the name of the biblical character who symbolized strength and invulnerability, but for the loss of his hair. Little did anyone appreciate at the time the sheer force of magnitude that baby Sam Berns would usher into our domain.

You can tell by the title of this blog that Sam’s life ended all too early, in early January 2014. Sam lived with Progeria, an extremely rare disease causing rapid aging and premature death at average age 13, and always from a cardiovascular disease related event. Symptoms are fairly obvious, and marked by characteristics of aging, including hair loss. Sam was 17.

In a world in which “normalcy” is the preferred default, the public either vilifies or lionizes anything or anyone slightly deviating off course, in my opinion.

But the Sam who each of the thousands who came to know him recognized that he defined himself not by Progeria, but by his interests and his dreams and friends and family. He was extraordinary in many ways that transcended Progeria. When he came of age, I believe he recognized and shouldered an obligation to serve as not only an ambassador for Progeria awareness, but as an envoy for living life in a way that encourages each of us to conquer our fears, smile through the tears and pain, fearlessly pursue our dreams, and accept what we simply cannot change. While serving and inspiring others in the process.

Spectrum began working with Sam and his parents and Aunt Audrey Gordon (Leslie’s sister), who established the Progeria Research Foundation in 1999. How improbable is it that a child with a condition affecting only one in 4,000,000 children would be born to physician parents? And not just any doctors, but pediatricians with advanced degrees in public health from prestigious institutions who had the training and education and courage to do something to help first their son. Then all children they could find with Progeria. And eventually, all humankind because we all age. As if that weren’t enough, Audrey was then a practicing lawyer who today serves as the Foundation’s president.

We were introduced to Sam and his family in late 2002 by Dr. Francis Collins’s team during his tenure as director of the National Human Genome Research Institute in Bethesda. Larry Thompson, the Institute’s communications director, sought assistance from a public relations firm that could help the Foundation carry out the media announcement of the Foundation’s discovery, led by Dr. Collins, of the defective gene that causes Progeria. Larry contacted Susan Newberry at Spectrum, who arranged a visit with the family. Right there and then, we said to Scott and Leslie, “Yes, we’ll help you.”

Thus began a partnership that continues today. Yesterday, Frannie Marmorstein, Pam Lippincott, also of Spectrum, and I attended Sam’s funeral service at the family’s temple in Foxborough, Massachusetts. Speaker after speaker gave testimony to Sam’s impact on them and in their world, to the more than 1,200 family and friends in attendance, with nine local television camera crews keeping vigil in the rain across the street, capturing the seemingly endless funeral procession. His high school band trumpeted out one of Sam’s favorite songs. His “bros,” three close friends, shared their budding entrepreneurial plans centered around a vision of human cyber-transport, with Sam as the primary architect.

Most if not all the speakers shared that Sam wouldn’t want anyone anywhere to cry or feel sorry. But I’m sad to let Sam down even for just today, because when someone occupies a big place in your heart and mind, and that person is taken away abruptly, the hurt is natural and unstoppable. And since I received the call that he’d passed away, the ache has been relentless.

Fittingly, New England Patriots owner Robert Kraft once again stepped up to support Sam, his family and the Progeria cause by hosting the post-burial gathering at Gillette Stadium. In New York last October, Mr. Kraft donated $500,000 in a matching grant to the Progeria Research Foundation in an emotional response after his viewing the premier of the HBO Documentary “Life According To Sam.” Sam was not only the number one Patriots fan, but occupied the lead fan position with the Celtics, Bruins and Red Sox.

After meeting and spending time with Sam, whether you head the National Institutes of Health, the Dave Matthews Band, the New England Patriots or are just an average Joe, you walked away a different person, and for the better. Here was a young man who had every reason to lament, quit and wallow in his disabilities. We the “normal” allow comparatively trivial circumstances – slow Internet speed, traffic jams or being passed over for a raise – to ruin our days or throw us into complete upheaval. Sam Berns not only didn’t allow Progeria to circumscribe his life, he challenged himself in ways that eclipsed his peers and, let’s face it, many adults.

If you didn’t have the opportunity to meet Sam, and would like to see firsthand just what I’m talking about, you may do so right from your computer or home television system. Visit HBO GO, the on-demand system, and sign up to watch “Life According To Sam” by the Academy Award-winning directors Sean and Andrea Nix Fine. It’s about 100 minutes long. You’ll learn as much about yourself as the documentary reveals about Sam, his family, friends, dreams and the fantastic progress in understanding and toward eventually conquering Progeria. And why not make it a double feature by then watching Sam give a more recent testimonial of his rules for a happy life by viewing his TEDxMidAtlantic presentation from this past October? I’m doubly proud, because former Spectrum talent, and another friend of Sam’s, Liza Morris, arranged this special event to give us a subsequent glimpse of this young man, and his profound strength.

In homage to Mr. Berns, “May he rest in peace” would be just a little too rote. I think that Sam was already at peace, in full accord with who he was, never mind Progeria. And it’s really hard for me to imagine Sam resting in the afterlife, forever free of Progeria.