Steps in time
Walk MS has a long history and loyal participants.
by James Townsend
When she was diagnosed with multiple sclerosis 27 years ago, AnnaMarie Prono recalls, “My doctor told me, ‘We don’t have anything for MS. It’s an orphan disease because not enough people have it for the pharmaceutical companies to invest in research. And it doesn’t have a good platform like Jerry’s Kids.’ (Comedian Jerry Lewis hosted the annual telethon for the Muscular Dystrophy Association for 45 years.)
“Well, that made me mad and I happened to see a poster on the subway about [the National Multiple Sclerosis Society’s] Walk MS, and signed up my mom, my sister and my cousin. We called ourselves the AM Team, and that’s what we’ve been ever since.”
For Prono, who lives in Forest Hills, Queens, in New York City, that first walk was a long one — about 13–15 miles, she says. “It was hard! We all had blisters, and we didn’t raise a lot of money that year.”
Since then, her team has grown to as many as 30 family members and friends and has raised more than $200,000. “One year, my husband made a giant wooden foot about four feet wide and a foot high and decorated it with Christmas lights. He’s carried it on the walk ever since.”
Since its beginning in 1988, Walk MS has become the 10th largest nonprofit series and the 13th largest nonprofit event in the U.S., according to Christine Wiley, marketing director for Walk MS and Challenge Walk MS. What began as 42,000 people at 42 sites, raising $4 million, has grown to nearly 300,000 participants and volunteers at more than 350 locations. In 2017, the event surpassed $1 billion in funds raised so that people affected by MS can live their best lives as we seek a cure.
“Walk MS raises around $38 million each year,” Wiley says. “It brings together communities from all walks of life. It funds MS research to find a cure as well as life-changing information and resources.”
Part of its success, she says, is that Walk MS is for everyone. The choice of a 1- to 3-mile route is so everyone can share a sense of accomplishment — and it’s fully accessible, not only to people who can walk unassisted, but also to those who use mobility aids of any kind. Prono is just one of several dedicated and passionate Walk MS participants who have been involved in the event for more than 20 years. Here are a few of their stories:
Steve Oakes, 52, has participated in Walk MS every year since 1996, and these days he’s joined by his wife, two children, and his 2-year-old grandson in the Wilmington, North Carolina, Walk MS.
“My father had MS and died when I was 15,” Oakes says. “It was really painful watching him go downhill as the symptoms progressed year to year. Back then, there was very little in the way of medicine to help manage the disease. I believe the only thing that helped him was Valium. After that I felt that if there was anything I could do to help the cause, I needed to get involved.”
Then in 2003, Oakes himself was diagnosed with MS. But that hasn’t stopped him from participating in Walk MS.
“There have been a few years when the heat bothered me,” he says, “and in the beginning the walks were much longer. Now the one we do in Wilmington is about 3.5 miles, and we can manage that well.”
Another thing that continues to inspire him is the community support. It’s not really the money, but that they’re willing to help. Some people even look for me every year to contribute.”
Cheryl Schack, now 73, was finally diagnosed with MS in 1987 after many doctors failed to recognize her condition. A longtime resident of Queens, New York, currently living in Westbury, Long Island, she got involved with the Society and its Pooch Parade in 1998, which eventually transitioned to the present day Walk MS.
“That was such a wonderful event with all the dogs,” Schack says. “I really miss it. And that first year we raised $5,000 or $6,000 with the help of our family and friends making contributions, no corporate sponsors.”
Since then she has taken part in both the Long Island and Manhattan walks, nowadays as a volunteer. “I always stay involved because I really believe people need to be educated about MS.”
The Long Island Walk takes place on Jones Beach, the largest beach on the island. Her team is named “The Cure,” and her son Neal serves as the team’s co-captain with his wife, Jennifer. “My grandchildren, Corey and Leah, have been participants since walking them in their carriages,” Schack says proudly.
“One of the things that inspires me most is meeting so many people who understand the disease, and all the spouses, partners, and relatives of the people with MS who walk to support them and the research,” she says. “I’ve made so many good friends over the years, a great group of folks.”
When Lynne Kindy was diagnosed with MS on her 31st birthday, she already had been looking around for volunteer opportunities. “I just thought, ‘Well, it looks like this is what I’m supposed to be doing,’ so I found the MS Society and got involved with the walks.”
That was nearly three decades ago, and she has helped her local Walk MS event change and grow ever since, including currently serving as the event’s chair and part of the preplanning group. “There used to be walks in Flint and Saginaw [Michigan], but around 1994 we suggested that they be combined and moved to Frankenmuth. Our first year we nearly doubled the number of participants, and we actually did double the amount of money raised.” Today it’s Michigan’s second-largest Walk MS site. “Everyone knows that having MS is no fun, but as a result of being involved in this community I’ve met so many wonderful people over the years.”
Her team comprises many friends: coworkers at Team One Credit Union, and family including her 16-year-old daughter, Haley. “We’ve had as many as 100 people on the team, including volunteers,” Kindy says. “Even in lousy weather people come out in full force,” she says. “We’re getting ready for our 22nd year in Frankenmuth!”
James Townsend is a writer in Boulder, Colorado.
Visit Walk MS to learn more and to participate.