They run because they can - UMass Medical School

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On Monday, seven runners will help change the course of a disease that devastates 5,600 people and their families every year.

Russell Becker, Brendan Byrne, Charlie Desourdy, Lauren Grenier, Susan Marshall, John Megan and Joseph Strauss will run the Boston Marathon in support of the UMass ALS Champion Fund, supporting research into amyotrophic lateral sclerosis—ALS or Lou Gehrig’s disease. Launched with help from former Massachusetts Gov. Paul Cellucci, who has ALS, the Champion Fund benefits the work of Robert H. Brown Jr., DPhil, MD, Cellucci’s doctor and a leading scientist in neurodegenerative and neuromuscular diseases.

Each of the runners has a personal connection to the disease and each has committed to raising at least $6,000 that will go directly to Dr. Brown’s team.

Russell Becker grew up watching two of his uncles run the Boston Marathon. Cheering them on was a family tradition. But growing up, he also witnessed the deaths of his grandfather at 66 and another uncle at 31 from ALS.

At 15, Becker, who is now a senior at College of Charleston, weighed 300 pounds and was struggling in high school. He was inspired by his uncles’ love of running enough to try it himself. Running alone late at night because he was self conscious about his weight, he gradually transformed himself into a runner and in the process lost 120 pounds. He ran his first 5-mile race that same year in honor of his uncle Jimmy Kennedy, whose life was cut short by ALS.

Russell Becker running in the 2012 Boston Marathon.

“I began running to benefit myself. Now I run to benefit others,” said Becker. He was inspired not only by his uncles’ love of running, but their commitment to finding a cure for ALS as well as other philanthropic endeavors. Becker’s uncle Richard Kennedy is president of the Angel Fund, a non-profit solely dedicated to funding ALS research, and his uncle Johnny Kennedy is co-founder of Christmas in the City, a non-profit that brings the spirit of Christmas to homeless families in the Boston area.

Becker ran his first Boston Marathon last year. It was a grueling experience, with the heat reaching 90 degrees and many runners dropping out. Becker proudly made it to the end and will be running again this year, wearing bib #24334.

“The more I run, the more committed I become. I’m not just running for me anymore; I’m running for a great cause that has become a huge part of my life,” Becker concluded.

John Megan has run the Boston Marathon four other times and always in support of cancer research—his mother died from heart cancer in 1995 and she served as his inspiration for his earlier runs. This year, the marathon is personal in a different way: His stepfather, Jack Brandley, is battling ALS, hoping for a cure, but knowing that it will likely come too late for him.

“It’s day by day for Jack. Right now he’s in a rehab hospital and it was touch and go over Christmastime. He’s on a vent right now, but thank God he can write and communicate with his hands,” Megan said.

Megan challenged himself to qualify for the Boston Marathon one more time, after an eight-year hiatus during which he got married and started a family. He ran the Hampton Beach Marathon in the fall of 2011, which qualified him to enter this year’s Boston. He’ll be wearing bib #7931.

“I run because I can. I’ve always considered it a privilege,” said Megan. “Unfortunately, those with ALS lose control of their limbs and they can’t do it anymore. I never take that for granted.”

Why we’re running

Russell Becker’s grandfather and uncle died from ALS, and he admired the way another uncle, Richard Kennedy, dealt with his grief by working with the Angel Fund, a nonprofit organization that raises money for ALS research. Becker was motivated to lose 120 pounds and get into shape, running his first Boston Marathon last year. “This year, I will train harder, beat my previous finishing time and raise money for the Champion Fund in the hopes of seeing an end to this horrific disease,” he said.

Brendan Byrne is running the Boston Marathon in honor of friend Pete Frates, a 28-year-old former Boston College baseball player who was recently diagnosed with ALS. “Pete’s positive attitude, drive and courage have inspired me to help him with the fight to strike out ALS,” said Brendan.

Charlie Desourdy, associate CIO of enterprise networks at UMMS, will be running for the UMass ALS Champion Fund Team for the second year in a row. “I am a longtime runner and an even longer-time employee of UMass Medical School,” said Desourdy. “Dr. Robert Brown and his team are making great progress in the battle against ALS and every bit of fundraising helps.”

When Lauren Grenier decided to get back into shape and train for the Boston Marathon, she knew immediately that she wanted to help raise money for the UMass ALS Champion Fund. “While Governor Cellucci was on Beacon Hill, I had the opportunity to be a part of his campaign office. I quickly learned that he was a man who was highly respected and genuinely liked by staffers, colleagues and his constituents. I am honored to help him raise funds in a different capacity and for a cause that is so personal to him.”

Susan Marshall is running to honor the memory of her father, Vance Norton Jr., who died from ALS 20 years ago. “I watched him desperately try to maintain control of his legs by using a walker, only to see him have no choice but to move to a wheelchair and eventually to a nursing home,” she said. “While my father's mind could not tell his muscles to move, he never lost his ability to think and observe everything going on around him. I am raising money to help find a cure, to prevent this kind of pain and suffering for those who have the disease as well as for their loved ones.”

John Megan has many reasons for running. “I run because I can. I run because it makes me feel healthy. I sometimes run for the challenge of it (such as tackling a marathon). Such a challenge, however, is nothing like battling a terrible disease like ALS. I'm running this year’s Boston Marathon for the UMass ALS Champion Fund in honor of my step father Jack Brandley who continues to battle ALS, and others that have suffered through this terrible disease.”

Joseph Strauss of New York City is also running to honor the memory of a parent lost to ALS. After his mother, Jean, died in 1999 at the age of 63, Strauss began training for marathons so he could both run and fundraise for ALS research. “I have been training hard and I am honored to have the opportunity to run the Boston Marathon as part of the UMass ALS Champion Fund Team,” he said.

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