Steve Allen Races to Find a Cure for Grandson

steve-allenWith a lifelong passion for running, Steve Allen, a Senior Claims Consultant at Trustmark Insurance Company in Worcester, is used to competing. He’s been in hundreds of races across the country, including 27 marathons, 13 of which were the iconic Boston Marathon.

But last month, Allen had the opportunity to compete in the Boston Marathon on behalf of another passion: To raise money to help end glucose transporter deficiency syndrome (Glut1 DS), a rare and debilitating metabolic disorder affecting his 11-year-old grandson and thousands of other children.

“I last ran a marathon in 2003 at the age of 50, at the exact time that my then infant grandson, Bobby, was diagnosed with Glut1 DS,” said Allen. “This year, I had the chance to run for all the kids afflicted with this disorder. I ran with the purpose of raising money to support research to cure Glut1 DS. And they are close to finding a cure.”

Glucose transporter deficiency syndrome (Glut1 DS) is a rare pediatric brain energy metabolic syndrome in which an afflicted child’s cells do not pick up and transport glucose to the brain properly. Children with this disorder have a myriad of physical and mental disabilities, ranging from mild to so severe that they cannot walk or talk. But thanks to an early diagnosis, Allen’s grandson has been able to control his Glut1 DS symptoms by adopting a restrictive, high-fat ketogenic diet.

As a result of his effort ― and donations from his Trustmark coworkers, running associates, friends and family ― Allen raised more than $15,000 for Milestones for Children, an organization founded in 2008 by family and friends to fund and support research efforts to cure Glut1 DS.

“I thought raising that much was pretty cool for one person to do,” said Allen.

It was also remarkable, he says, that he was able to run in the marathon at all. The Boston Marathon is the only marathon in the world with a qualification requirement. To qualify, runners must have completed a marathon within the previous 18 months, with a qualifying run time based on their age group and gender. Allen hadn’t run a marathon since 2003. However, the Boston Marathon makes an exception to the qualification times for runners from its marathon partners, such as sponsors, charities and local running clubs.

“My running club, the Cape Cod Athletic Club, sent out an email saying that they had five club invitational numbers, and if you wanted to be considered, apply and send them your story,” said Allen. “I got to thinking about it and thought about my grandson’s foundation. I applied and they gave me a number because I ran to raise funds for Milestones for Children.”

The money raised will be used to continue promising but underfunded research trials that Milestones for Children says will likely lead to a cure for kids with Glut1DS.

“Every step I took as I trained and ran the marathon was in honor of Bobby and all kids with Glut1 DS,” said Allen. “By helping them, together we can honor those affected by the tragic events at Boston Marathon last year, and by making this year’s Boston Marathon historic for the good that is achieved.”

In appreciation of Allen’s run on behalf of Glut1 DS, the Colleen Giblin Foundation, a partner of Milestones for Children, added a leaf in his honor to its “Tree of Hope,” a permanent display at the laboratories at Columbia Presbyterian Medical Center.

As far as running the marathon was concerned, Allen says his goal at age 61 was to come in at twice his best time for the race, which was 2:35 at the age of 30. “I came in at 5:20. I missed it by a few minutes, but it was easily my most fulfilling race.”

[Courtesy Trustmark Insurance Company]

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