Darien native runs race to bring awareness to father’s rare disease
As anyone who may have waited at the finish line of a long race would know, it’s a very emotional experience. Everyone who participates in such a race has his or her own personal reasons for doing so.
Darien native Meg Marren, 24, is no different. She recently ran the 2019 Brooklyn Half Marathon as a birthday present to her father, Dave Marren, who suffers from a rare disease called primary lateral sclerosis (PLS).
Through a fundraising page, Meg raised more than $36,000 for PLS research, from 217 donors.
PLS is a rare upper motor neuron disease that afflicts 1,500 people in the United States.
The Spastic Paraplegia Foundation (SPF) works to find a cure for hereditary spastic paraplegia (HSP) and PLS.
SPF also provides grants for PLS and HSP research, and raises money for those conditions through individual donations, such as Meg’s.
Both conditions are related to amyotrophic lateral sclerosis (ALS). However, unlike ALS, they’re much slower progressing, not fatal, and only involve the upper motor neurons.
Dave, who is 58, was diagnosed with PLS in the summer of 2007. However, the first sign of the disease came in 2003, when he was working as a senior managing director at Bear Stearns, which has since been taken over by JP Morgan.
He caught his foot on the marble floor at work.
“It was so slight I didn't even realize at the time,” he recalled.
He also had trouble keeping up with his normal running pace on the treadmill.
Bonding over fitness
Dave, whose birthday is Oct. 7, is a lifelong athlete and has always shared his love of exercise with Meg, who now lives in Manhattan.
“We have a bond for sports and athletic ability,” said Meg, who is one of four children Dave has with his wife Carolyn. Meg played basketball as a student at Darien High School. She now works in human resources for a Manhattan law firm.
“He was always active and always running around with us when we were younger,” Meg said.
She said she has always wanted to run in a half marathon.
“I tried before and then I got injured with an IT (iliotibial) band syndrome,” she said. “When I felt healthy, I started training to see if it could happen.”
Meg trained for the race on a path by the East River in Manhattan.
About halfway through her training, she decided to raise money for her father and for others who have his condition.
“He can’t run anymore, so I thought it was a nice way to do something for him with a sport he once enjoyed doing,” she said.
So, she set up a GoFundMe page, with all the money raised going directly to SPF. The page was up for about a month.
The SPF Foundation posted the page on its website. It also sent Meg a shirt to wear for the race, which says “Chasing a Cure.”
Meg said she had a “very fun” race day, which was Oct. 19. Her college and high school friends came to cheer for her, as well as her parents and one sister. They held encouraging signs.
She saw her father at two different points throughout the race.
“He had a huge smile,” said Meg, whose finishing time was two hours, nine minutes, and 33 seconds.
Meg would like to run a race for her dad every year.
She said she liked getting the opportunity to raise money for her father and get the word out about his condition, “since not too many people know much about it,” she said.
“It means a lot that everyone was able to donate to the cause,” she added. “It showed me that everyone does care about him.”
Life with PLS
Dave is now on disability and is being treated at the Eleanor and Lou Gehrig ALS Center at Columbia University Medical Center in Manhattan.
He gets physical therapy regularly, which includes stretching, light weight lifting, swimming, and massages.
The progression of his disease appears to have slowed down, he said.
Since leaving his job, Dave has kept busy with household projects. He has scanned over 2,000 family photographs in his home computer. He also scanned family movies.
He has published a book called “Bear Tracks: The Development of the Repo Strip Market at Bear Stearns,” which is available on Amazon.
He currently uses a walker in the house and a wheelchair outside. He suffers from stiffness in his muscles, which affects walking, fine motor skills, and talking.
“It was very difficult for the kids to see their father who was very healthy and fit, to live through it all these years,” Carolyn said. “David has been a role model to his kids in trying to always keep fighting to do the best he can do to combat his disease.”
“He’s so caring and gives to charities. He always wants to give back and help others,” Meg said. “It was really meaningful to be able to do this for him.”
For more information or to make a donation to the Spastic Paraplegia Foundation, visit sp-foundation.org.