WEST ORANGE, NJ – After two years of pandemic-related delays, the National Multiple Sclerosis Society is once again hosting fundraisers in person and returned for such a walk on April 24 at the Clipper Pavilion in West Orange. The hikers who signed up to participate raised money for the national nonprofit that provides resources for people diagnosed with multiple sclerosis and their families.
“It’s exciting for us to be back and for the people who want to come back personally,” Yasmin Nielsen, president of the NMSS New Jersey Metro, said in an interview with the West Orange Chronicle at the hike. “We wanted to get them to come back. They are already doing so much hard work fundraising.”
Individuals can sign up to raise money and run alone, but many make it a team effort and bring a group to events across the state. Many participants either have MS themselves or have a family member or friend who does. The money raised goes to the programs that NMSS runs, including MS Navigator.
“If someone is newly diagnosed and needs help finding a community that is also going through this, we can connect them,” Nielsen said. “We can also help if they find a neurologist or need financial help.”
The organization also helps patients manage 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, problems with coordination, vision problems, and sometimes cognitive problems. Nielsen said patients often don’t know what to do when a diagnosis is made.
“A lot of them get diagnosed and then google it,” she said. “They think, ‘I have MS, what should 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 towards a cure for MS. After all, that is the goal.
“The most important thing we do is research to make sure we get rid of this disease,” Nielsen said.
No one knows this better or supports the cause more than Laura Cohen, who was the West Orange Walk’s top individual fundraiser and leader of the pinnacle team, the Mitzvah Squad. Cohen’s husband was diagnosed with MS at the age of 21 and lived with the disease throughout his adult life. Cohen saw a flyer promoting the walk at a hair salon when she took her son to the hair salon 23 years ago, and she and her family have been taking part ever since. In the early years, they participated individually, but eventually formed 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 formed a team a few years later. We are not powerful in number of team members, but we are in loyalty of donors.”
The Mitzvah Squad has raised a total of $1 million, and a large portion of that will go towards research. Cohen said her husband didn’t lose mobility until he was in his late 30s, and now at 69 he needs help with certain things. Most of the innovations made in MS treatment didn’t exist when he was first diagnosed, so chances are these newer treatments won’t necessarily work for him because his disease is so advanced. But Cohen wants to find a cure one way or the other.
“We hope that one day there will be a cure,” Cohen said. “It’s a shitty disease and we’re raising money to get rid of it.”
Bryan Murray, a new member of the New Jersey chapter board of trustees, is stepping in for his wife. He said in an interview with the Chronicle at the event that his wife was diagnosed with MS last summer.
“There’s only so much you can do as a spouse,” 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 to proceed. But many people don’t know what MS is or how it affects the people who have it.
“We were at a wedding and I couldn’t even count how many people were like, ‘Jen looks amazing!’ I thought she was in a weakened state,” Murray said. “There’s a chance these things will happen, but maybe not. So I can support them. Sitting on a board, collecting money and telling people to walk around is pretty easy.”
Although they’re raising money to cure a serious illness, the walks are usually a happy affair.
“It feels good to see teams wearing matching jerseys,” said Cohen. “Everyone knows why we are here and everyone is so cute. Everyone has the solidarity of going through this and that inspires us a lot. It really helps us.”
Photos by Amanda Valentovic