WEST ORANGE, NJ — After two years of pandemic-related delays, the National Multiple Sclerosis Society is back to hosting fundraising walks in person and returned to the Clipper Pavilion in West Orange on April 24 for one such walk. Raising money for the national nonprofit that provides resources for people diagnosed with multiple sclerosis and their families, the walkers registered to participate raised approximately $100,000 at the event.
“It’s exciting for us to be back, and for people to want to come back in person,” NMSS New Jersey Metro President Yasmin Nielsen said in an interview with the West Orange Chronicle at the walk. “We wanted to get them to want to come back. They already do so much of the heavy lifting in fundraising.”
Individuals can sign up to raise money and walk on their own, but many make it a team effort and bring a group to the events held around the state. Many participants are either affected by MS themselves or have a family member or friend who is. The money raised goes into the programs that NMSS runs, including MS Navigator.
“If someone is newly diagnosed and they need help finding a community who is also going through it, we can connect them,” Nielsen said. “We can also help if they need to find a neurologist or need financial help.”
The organization also helps patients navigate the early stages of the disease, which disrupts the nervous system’s ability to transmit signals. It can cause a range of symptoms, including muscle weakness, trouble with coordination, vision problems and sometimes cognitive issues. Nielsen said that, often when patients are diagnosed, they don’t know what to do.
“A lot of them get diagnosed and then Google it,” she said. “They think, ‘I have MS, what do I do?’ It helps avoid that scary internet search of, ‘I have a rash, and now I’m dying.’”
But the vast majority of the money raised supports research to find effective treatments and work toward a cure for MS. That is the goal, ultimately.
“The biggest thing we do is research to make sure we get rid of this disease,” Nielsen said.
No one knows that better or supports the cause more than Laura Cohen, who was the West Orange walk’s top individual fundraiser and the leader of the top team, the Mitzvah Squad. Cohen’s husband was diagnosed with MS when he was 21 and has lived with the disease for his whole adult life. Cohen saw a flyer advertising the walk in a barbershop when she took her son to get a haircut 23 years ago, and she and her family have been participating ever since. The first few years they participated individually but eventually created their team.
“I thought, ‘I can do that. I can ask people for money,’” Cohen said in an interview with the Chronicle at the event. “We made a team a few years later. We’re not mighty in the number of team members, but we are in the loyalty of donors.”
The Mitzvah Squad has raised $1 million cumulatively, and a large portion of that will go to research. Cohen said her husband didn’t start to lose his mobility until he was in his late 30s, and, now 69, he needs help doing certain things. Most of the innovations that have been made in MS treatment didn’t exist when he was first diagnosed, so chances are that because his disease has progressed so far, these newer treatments won’t necessarily work for him. But Cohen wants to find a cure either way.
“We’re hoping someday there will be a cure,” Cohen said. “It’s a crappy disease, and we raise money to get rid of it.”
Bryan Murray, a new member of the New Jersey chapter’s board of trustees, walks for his wife. He said in an interview with the Chronicle at the event that his wife was diagnosed with MS last summer.
“Being a spouse, there’s only so much you can do,” Murray said. “But I took the initiative because it’s hard not to be excited about what they’re doing.”
His wife is still in the early stages of MS, so they don’t know how it will progress. But many people don’t know what MS is or how it affects the people who have it.
“We went to a wedding and I couldn’t even count how many people said, ‘Jen looks great!’ thinking she’d be in a debilitated state,” Murray said. “There’s a chance those things will happen, but they might not. So supporting her is what I can do. Sitting on a board raising money and telling people to walk around is pretty easy.”
Despite raising money to try to cure a tough disease, the walks are typically a happy affair.
“There’s a good feeling of seeing teams wearing matching shirts,” Cohen said. “Everyone knows why we’re here, and everyone is so sweet. Everyone has the solidarity of having gone through it, and that inspires us a lot. It really helps surge us further.”
Photos by Amanda Valentovic