Everyone knows at least one family — if not many more — who have been emotionally and financially devastated by serious illness. If you’ve ever wondered how you can help, a new charity, Neighbors Fundraising For Neighbors (NFFN), has been established for just that purpose.
Rabbi Shmuel Wilhelm, founder of the Friendship Circle of Greater Mercer County will serve as president of the newly formed organization. He said that as someone who has worked to provide friendship and support to special needs individuals, he has seen the demand for such an organization “on a daily basis.”
“People have a need for things insurance cannot cover,” said Wilhelm, also the assistant rabbi at the Chabad of Greater Mercer County, who noted that NFFN is open to anyone regardless of race, religion, age, or nationality. “It’s really a quality of life issue for them. They need support and help with their basic needs to live a normal life.”
He said in the years since its 2010 inception, the Friendship Circle has seen how difficult simple tasks many take for granted can be. Even more draining for the family is having to fundraise for treatments, medical equipment, and home renovations to accommodate a disabled loved one. In order to allow donations to be tax deductible, a fundraising drive has to be funneled through an organization recognized by the IRS; contributions made through GoFundMe drives and organized community events are not tax-deductible.
There is a link on its web site, nf4n.org, to the Network for Good, which is processing credit card donations, sending confirmation letters as required by the IRS, and handling bookkeeping. Money raised for individuals will be distributed monthly to service and equipment suppliers.
NFFN Secretary Laurie Landy of Monroe is an occupational therapist who operates Special Strides which incorporates equine therapy. She said they are dealing with the challenges of seeking funding for children who are chronically or severely disabled. In some cases, the family is financially wiped out.
“I’ve seen different families in crisis managing the severe disabilities of a child,” said Landy, an active member of the Jewish Federation in the Heart of New Jersey. “If a child has a preexisting condition, the insurance doesn’t cover therapies and the new and ever-changing needs of the child impose a huge burden on family.”
The first beneficiary of the new charity is 8-year-old Ray Fantel of Kendall Park, who was diagnosed at five months old with Spinal Muscular Atrophy (SMA), a terminal form of muscular dystrophy with a life expectancy of two years. A second child, Madison Smith of Florida, was recently diagnosed with the same condition.
“The fact that people from Florida have already called us for assistance reiterates the need and importance an organization such as this,” said Wilhelm. “There is a need for people who have been overlooked until now.”
Despite defying the odds, Ray’s needs have forced his family into a constant struggle with insurance companies, fundraising, and monitoring his needs. Currently, he needs a new motorized wheelchair costing $35,000, according to his mother Marcy, who is unsure how much will be covered by insurance. Last year, the family’s primary insurer paid out $545,000 for Ray’s medical expenses; the family’s portion was about $5,000.
However, in December sales began or a new Food and Drug Administration approved a new drug, Spinraza, for treatment of SMA. Marcy Fantel is hopeful, the insurance company will cover much of the cost, but she’s unsure.
“Each injection costs $125,000 and Ray will need six in the first year and three times each year thereafter,” she explained.
Past experience has taught her that “Ray falls into the forgotten bucket,” because pharmaceutical companies focus on presymptomatic or very young children.
“As children get older they become less interesting to the pharmaceutical field because the disease has set in,” she said.
When Ray and his 300-pound wheelchair became too heavy to carry up the stairs, the family raised money under another charity’s umbrella for a handicapped accessible staircase. And when Fantel and her husband, Mathew, needed a new handicapped accessible van to transport Ray, Wilhelm and the Friendship Circle ran a fundraiser through its organization.
Marcy said she has noticed both people and corporations are more likely to give if they know the donation is through an IRS recognized charity .
“I also know friends and family have wanted to help because they knew Ray needed things and wanted to offer support, but felt funny handing us a check,” said Marcy. “I know Neighbors Fundraising for Neighbors will definitely help many people.”
Meanwhile, Ray is enrolled in public school, receives religious education at Anshe Emeth Memorial Temple in New Brunswick, celebrates his birthday monthly with his parents and older brother, and has gone to Disney World.
“It makes you appreciate the small things and take life a little bit slower because you don’t know how much time we’ll all have together,” said Marcy.