Something remarkable has been happening in Wantagh since early October: SAS Realty owner Tony Smith and roughly a dozen of his colleagues have been knocking on every door, hoping to raise awareness of multiple sclerosis and the Cheryl Manne Fund benefiting MS research.
The fund, established 10 years ago in honor of Manne, Smith’s late wife, provides for an annual summer internship at Hofstra University’s Zucker School of Medicine for a first- or second-year medical student. Smith’s goal is to visit all 10,000 homes in Wantagh in 30 days, and share an information packet on MS and the fund. Smith has also pledged to donate $500 from each listing or sale made by his agents throughout 2019 and 2020.
“We’re able to make contact with something like 99 percent of the houses in Wantagh,” Smith said. “I don’t move so fast anymore, so I can only cover maybe 170, 180 houses in a day. But we have one agent who was able to cover more than 400 houses in one day. And another one went out with his two daughters and covered 800 houses.”
MS, a disease of the central nerve system, affects more than 1 million Americans, according to the National Multiple Sclerosis Society.
Manne began showing symptoms in 1982, six years after the couple established their real estate business on Wantagh Avenue. She was diagnosed in 1983, Smith said. Early indications of the disease include tingling in the fingers and toes, fatigue, depression and increased anxiety. Smith described how his wife slowly lost her ability to walk over the last 16 years of her life, and eventually had to use a wheelchair.
“The disease has been identified for about 250 years, but nobody knows what causes it,” Smith said. Although it can affect people at any age, it most commonly appears in those between ages 20 and 40. Factors that contribute to its development include obesity, the presence of autoimmune diseases like the Epstein-Barr virus and smoking.
Manne died in 2009, the year the Hofstra medical school was established. Smith approached the university the next year and asked about establishing a fund, according to Anne Koestner, the medical school’s director of development and alumni affairs. Since then, Smith has provided funding for 12 internships.
Applicants are drawn from across the country, and the interns are selected by the medical school staff, Koestner said. In addiction to an honorarium, the foundation helps fund the interns’ research. Since MS’s cause is unknown, their research covers a broad spectrum, from virology and immunology to genetics.
The onset of MS can be subtle, Smith explained. “People don’t always want to admit something’s wrong, even when they know they’ve got it,” he said. “And then, once they do know, they don’t talk about it, because there doesn’t seem like there’s any point.” MS is currently incurable, although it is not always fatal, especially in its milder forms. And a range of treatments can help mitigate some of the symptoms.
One of the most common strains of the disease is relapsing-remitting MS, in which people experience long periods of remission, when symptoms are wholly or mostly absent. In another form, secondary progressive MS, periods of remission gradually decrease or disappear. According to the National Multiple Sclerosis Society, 90 percent of those with RRMS develop secondary progressive MS within 25 years of the disease’s onset.
Primary progressive MS is the most serious form of the disease, affecting roughly 15 percent of all patients. It is the latter form that most people are familiar with.
“People with MS tend to be strong, outgoing, generous people,” Smith said.
Unlike some degenerative diseases, MS leaves the mind intact. Manne remained mentally sharp and generally upbeat throughout her lengthy illness, despite her physical decline, Smith said.
He and his agents hope their 10,000-door campaign will help raise local awareness of MS. He has been assisted by SAS agent Claudia Massari, who knew Manne as a colleague, and by Marilynne Rich, a local social media consultant and the Wantagh Chamber of Commerce’s second vice president.
“[MS] is like the reverse of Alzheimer’s, which affects the mind but leaves the body intact,” Smith said.
“Cheryl came to work every day,” Massari added, “and she was a super agent.”
“MS is hard on the caregivers, too,” Smith said. Patients can be ill for years or even decades, and need increasingly intrusive levels of assistance. And “it’s really hard watching this happen to someone you care about. Besides the pain and the loss of physical abilities, there’s the loss of dignity.”
Even though it has been 20 years since his wife died, it is clear that Smith still feels her loss acutely. “I want to do whatever I can do to help other families,” he said, “so they won’t have to go through this.”