No one should have to outlive their child. But so it went with Matthew and Marissa Weippert, whose then 12-year-old daughter lost her nine-month battle with Acute Lympoblastic Leukemia back in November 2002. Out of the ashes of that tremendous loss came the Sarah Grace Foundation For Children With Cancer,
“We were fortunate that we had so much support from family, friends and the community,” Matt Weippert said. “We met so many people along the way that did not have that kind of support system. Afterwards, when we were in that limbo between November when she passed and her March birthday that was coming up, we tried to figure out how to carry on as a family of three [with our son James] instead of as a family of four. Looking back at her journey and our journey, we realized the support that we had and how so many other families didn’t have that support and how they struggled.”
The goal of the Hicksville-based nonprofit organization is to improve the quality of life of children with cancer and provide comfort and support to families of children suffering from cancer. Assistance can come in the way of moral support via programs that include holiday parties, ballgame outings and events that allow these immunocompromised children to experience Halloween and the holidays. Financial assistance for families includes meals, groceries and transportation allowances and the unfortunate reality of funeral expenses. Families are vetted through the foundation’s work with social workers and staff of the pediatric oncology departments of Steven and Alexandra Cohen Children’s Medical Center of NY (formerly, Schneider Children’s Hospital), Winthrop, Columbia, Montefiore, NUMC and other area hospitals that help identify these cancer patients, and their families, and provide assistance accordingly. Funeral planning is particularly troublesome for families, given the enormous expense involved for ceremonies like these in this part of the country. It’s a hurdle Weippert is well aware of.
“We used to be able to give $1,000 for a funeral and you get several charities chipping in—and some of the larger organizations give more—it takes that burden off the family,” he said. “Because of lack of funds or trying to stretch the funds—right now we’re averaging about $300 to $350 that we can kick in. It’s tough for us and it hurts the family that we can’t put in more. I have always said that I absolutely cannot imagine anything worse than losing a child and not being able to bury that child. And a lot of the families that we met along the way didn’t have the resources and struggled.”
The foundation raises roughly $50,000 annually and is constantly stretching out these funds to directly help between 100 to 125 families every year. And that doesn’t factor in the hundreds of toys and Halloween-related goodie bags sent out to all the area hospitals on Long Island and in New York City. COVID-19 has made the already difficult task of fundraising that much more challenging. The foundation recently canceled its annual comedy night at the Milleridge Cottage, which generally raises between $10,000 to $15,000. To that end, the nonprofit is finding creative ways to raise money. The most recent event was a Bake Less cake sale. Rather than have someone donate a cake or a recipe, people are instead asked to donate what they think they might have spent to bake a cake. The foundation raised $1,500, a decent result for a first-time attempt. In this new normal, Weippert acknowledges the crucial role social media plays in getting the word out about the foundation.
“We’re pretty frugal and able to stretch things pretty well, but it’s all a little bit of a challenge,” he said. “So many things are done through social media campaigns and that’s really the biggest area I struggle with. I’m an older person trying to understand these new ways online and utilizing social media for these kinds of things. I even commented to Marissa that I’d like to hook up with people in their late teens and early twenties that have grown up with this kind of technology and understand the workings and mechanics to help us promote our campaigns.”
The latest wrinkle for the foundation is the Weipperts’ decision to move to Central Florida to get away from the cold weather. The foundation will continue to be based in Hicksville, albeit at the new address of 17 E. Old Country Road, Unit B, PMB 202. Its founders will be returning north on a monthly basis to remain involved with the organization and to visit family.
“We’re going to be up here for fundraising events and to continue with our volunteer group here,” Weippert said. “We hope to expand upon that [in Florida] and maintain the work that we’re doing based out of Hicksville, because that’s where our hearts are. Our core base is in Hicksville and that’s never going to change. It’s just who we are.”
Visit www.thesarahgracefoundation.org or call 516-433-9745 to find out more about the Sarah Grace Foundation.