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Running for a cure - The Sun Chronicle : Local News

Running for a cure

Foxboro sixth-grader, who suffers from premature aging disease, gives fellow town residents a reason to run marathon

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Posted: Friday, March 27, 2009 12:00 am

FOXBORO - Sam Berns, 12, is a bright, fun-loving sixth grader. He smiles and laughs a lot. He likes to hang out with his friends, many from Ahern Middle School.

A tenderfoot in Boy Scout Troop 32, he will help with a scouts' pancake breakfast this Sunday and marches in the Founders Day parade in June.

Sam also has some intense scientific interests, such as hovercraft technology and "holograph communication."

He'd like to be an inventor, "hopefully to influence that someday when the world blows up, we're not on it."

He's also taken with cloning as a way to save animals from extinction.

"In seventh grade you get to study cloning, which I'm really, really excited about," he said.

"You can clone armies," he added with boyish delight.

His mother, Dr. Leslie Gordon, gently steers the talk from arms-race fantasy to sports, a surefire topic with Sam.

He enjoys all sports, playing golf and other sports, watching others.

Talking about the dominance of Kenyan runners in the Boston Marathon, he says they live and train in the mountains.

"Up a mountain, down a mountain … What's next? Oh, a mountain!" Sam says of the Kenyans' apparent immunity to heartbreak on Heartbreak Hill.

For the second year in a row, Sam will be near the Prudential Center finish line on April 20, cheering on Foxboro women running for a cause close to his and his family's heart: the search for the treatment and cure of Progeria, also known as Hutchinson-Gilford Progeria Syndrome.

Progeria is a rare "premature aging" disease that afflicts children.

So rare that, as of January, there were only 52 children in the world known to be living with Progeria, according to the Progeria Research Foundation.

Sam is one of those very special children.

Foxboro residents Paula Kelly and Wendy (Webber) Nelson are training to run the 113th Boston Marathon on behalf of the foundation.

Nelson, 38, a drug development scientist, and Kelly, 47, a certified public accountant, ran the Boston Marathon last year for the cause.

"Sam is one incredible 12-year-old boy. His strength and grace are an inspiration," said Kelly, whose son, Ian, 13, is one of Sam's buddies at the Ahern School.

A pre-race bash will be held at Waxy O'Connor's starting at 6:30 p.m. April 4 to help raise money to support Kelly's and Nelson's efforts.

Established by Sam's parents, physicians Leslie Gordon and Scott Berns, the foundation is dedicated to finding a cure and effective treatment for Progeria and its aging-related disorders.

"Finding the cure will help not only these special children, but perhaps also millions who suffer from heart attacks, strokes and other aging-related conditions," said Sam's aunt, attorney Audrey Gordon, president and executive director of the foundation.

When Sam was diagnosed with progeria in 1998, little information was available about the disease. There was no definitive test, no funding for research and no group advocating for children with the disease.

In 1999, Sam's parents gathered family, friends and colleagues and established the foundation.

Their professional background was especially helpful.

Leslie Gordon is assistant professor of pediatrics at the Warren Alpert Medical School of Brown University, where Scott Berns is clinical associate professor of pediatrics.

She is the medical director and he is board chairman for the foundation.

Its Web site, with 300 pages of information, is visited by an average of 15,000 people per month: researchers, doctors and families of children with Progeria.

Through the foundation's efforts, the genetic cause of Progeria was discovered in 2002 and, less than four years later, a first-ever Progeria drug trial - in which Gordon is co-investigator - began at Children's Hospital Boston.

The foundation is funding the trial, and money raised through sponsorships of the runners and Waxy's event will help fund the trial.

"For the first time ever, we have a potential treatment for Sam and the other children with Progeria," Audrey Gordon said.

For more information or to make a contribution, visit http://www.progeriaresearch.org">www.progeriaresearch.org or send a check to: The Progeria Research Foundation, PO Box 3453, Peabody, MA 01961-3453.

Make a notation "Boston Marathon" in the memo.

Donations to Kelly's and Nelson's run to help Sam and other children can also be made at http://www.firstgiving.com/paulakelly1">www.firstgiving.com/paulakelly1 or http://www.firstgiving.com/wendynelson1">www.firstgiving.com/wendynelson1.

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