I would like to piggyback onto the recent The Vibe of the Tribe podcast episode with Larry Tobin and Haley Friedler, who will be running the 2019 Boston Marathon to raise money for causes which are near and dear to their hearts. My brother Marty Levenson is doing the same thing and will do so on two artificial hips.
To back up a little, my family grew up in Quincy, as did the Kennedys, a family with nine kids. There was a Kennedy in the grade of each of us four Levensons. The closest friendship was between my twin brothers Marty and Bob and Dick Kennedy. They were tri-captains of the North Quincy High School track team. All went on to run marathons, especially Dick, who has run 31. They all married, had kids and went on to establish successful careers. Marty and Dick have grown especially close, having been buddies for 45 years.
Tragically, it turns out that the Kennedy family is cursed with hereditary ALS. Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a fatal neurodegenerative disease characterized by progressive muscular paralysis.
Christopher Kennedy, Dick’s father, died of ALS in the late ‘80s. He was a dean at Northeastern University; I got to know him when I went to graduate school there. The family was told at the time that the disease is not hereditary. This was proven to be untrue five years later when the youngest Kennedy, Jimmy, was diagnosed. ALS is hereditary in 10-15 percent of cases.
In response to these losses, Dick Kennedy went on to become head of the Angel Fund for ALS Research and has raised millions to find a cure. The annual Squirrel Run, in memory of Jimmy (“Squirrel” was his nickname), has become a 20-plus year tradition in Quincy every June. Every year, Dick sends the runners and walkers off with a powerful pep talk and recognizes each runner by name as they finish.
In 2016, to our shock, Dick was diagnosed with ALS. “I’m a thick-headed Irishman,” said Dick in an interview with the Boston CBS-TV affiliate. “And I tend to look optimistically at everything, but the optimism is real.”
“Since his diagnosis,” says Marty, “we’ve been traveling the world and making the most of everything we have.” They have traveled to China and France, San Francisco (where they visited with Olympic gold-medal runner Billy Mills), Puerto Rico, Memphis (where they saw another Olympian champion, Dave Whottle), and also managed to meet Bill Clinton and George W. Bush while promoting the Angel Fund.
This year Marty will run the Boston Marathon in Dick’s honor and to raise money for the Angel Fund. It will also be the 40th anniversary of his first marathon run.
All Angel Fund donations support the work of Dr. Robert Brown of UMass Medical School in Worcester. The lab there is working on gene silencing—finding genes that cause ALS and turning them off. In the CBS affiliate interview, Dr. Brown called Dick “one of the most extraordinary people I think I’ve ever met,” adding, “The Angel Fund’s impact has been absolutely enormous.” For more information, go to theangelfund.org.
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