CEO of Make-A-Wish Central New York talks about the organization’s 40th anniversary
By Mary Beth Roach
As the Make-A-Wish Central New York celebrates its 40th year, its president and CEO Diane Kuppermann discusses the organization and provides insights in how the agency grants wishes for children who are battling a critical illness in Central New York.
Q: How long have you been with Make-A-Wish?
A: This year, I am starting 33 years with the organization.
Q: Can you give us a brief overview of the organization?
A: It’s a global organization. Make-A-Wish America has 57 chapters and each chapter is an independent 501(c)(3) organization. Our mission is simply that together we create life-changing wishes for children with critical illnesses and our vision is to ensure that every eligible child has a wish come true.
Q: What is your budget, your coverage area and the number of employees that you have?
A: This year, our annual budget is $2 million. It is the most aggressive budget that we have had to date; but that is necessary for us to continue to say yes to every eligible child. Our chapter serves 15 counties in Central New York. We go from the Canadian border to Pennsylvania and Herkimer and Cayuga. We employ eight people.
Q: How are you funded?
A: We’re funded by individual donations, by special event fundraising, both internal and external. We get corporate support. We receive money from national corporate partners. That’s one of the roles our national office plays. They’re unique in that they’re there to serve chapters, but together, our partnership really makes things come true. Any child, regardless of where they’re treated, when they reside in our footprint, we are responsible for their wishes.
Q: What determines a child’s eligibility?
A: There’s a national set of criteria that defines what a critical illness is. Basically, it’s an illness that is progressive, degenerative or malignant at the time of referral. Our kids are really battling very serious health issues and are typically treated by a specialist.
Q: You mentioned referrals. How does that work?
A: The doctors are one of the primary referral sources or a medical professional; but it can come from the parents; it can come from the child him or herself, but most often we prefer that the referral comes from the child’s parent or the medical professional knowing that they have spoken to the child’s parent. We are all about hope and the power of a wish come true. When a parent makes that referral, then we are confident that we’re being invited into the family’s life, which is really important to us. Some people think of us as granting wishes to kids who aren’t going to make it. And that’s never, never something that we want to talk about because the truth is nobody knows. What we do know is the power of a wish has the possibility of changing a child’s medical trajectory.
Q: How many wishes has the organization granted?
A: Over the past 40 years, we have granted over 2,200 wishes to kids living here in Central New York. Last year, we granted a record number of 96 wishes in a single year and currently there are about 128 wishes in the pipeline — kids who are waiting to have their wishes come true. We were talking to Upstate Medical University Hospital and they’ve seen in the oncology unit, an unprecedented increase in their kids who were diagnosed with cancer. As we were looking at our year-over-year data through December (our fiscal year starts in September) — from September to December — our eligible referrals went from 16 to 30. We’re not quite sure why, but our hope is that every eligible child will receive a wish because it does make such a difference to their medical journey. And that’s certainly something that, we as an organization, have learned over the past 40 years.
Q: You talk about how it can change the trajectory of a child’s journey through whatever they’re battling. Can you give an example?
A: Nine out of 10 “wish kids” reported that the wish experience gives them relief from traumatic stress. Nine out of 10 “wish parents” saw their children’s emotional well-being improve during the wish process. For medical providers, they have told us that the wish is a turning point, something that increased compliance with treatment. It gave them a renewed strength to keep fighting their illness and to be forward-thinking. Eight out of 10 “wish kids” reported that their wish gave them the strength to fight their critical illness. It just changed their story in so many ways. They were no longer the kid who was sick. They were the kid that got to (fill in the blank with their wish). And the long-term impact that medical providers have shared with us is that they’ve observed that the wish experience has had a positive impact on the child’s physical well-being and overall quality of life.
Q: Is there an age range for the eligible kids?
A: Yes. The kids must have reached age 2-1/2 to be referred and they must be referred prior to turning 18 and they must have an illness that is verified by their child’s physician. It goes through a process through the medical referral process. The only other criterion is that the kids have never had a wish before from any other wish-granting organization. Other than that, it’s regardless of race, religion or economic status.
Q: What keeps you motivated after 33 years as director of the organization?
A: So many things keep me motivated. I think the number one thing that keeps me motivated is the gift of having two healthy children and that gratitude for their health. But seeing the impact that a wish has, not only on the child, but her family and her community, her peers, her physicians; the impact that wishes have on everyone at Make-A-Wish and the people that we get to involve in making wishes come true. It really is an unbelievable experience to see the power of hope and then the strength and joy that it gives to children and their families.
Q: Is there one wish that really tugged at you?
A: I would say there are over 2,200 wishes that have tugged at my heart and primarily because the unique thing about the wish is when it is truly that child’s wish, when you see the change in the child from the time we get to meet them till the time that their wish is granted and for those who choose to stay in touch with us — which we hope is many, many of our wish families — when we get to see kids today who are thriving, who are parents, who are raising their own kids. It just really gives you a feeling of such incredible inspiration that the kids are so resilient and they are so full of hope and curiosity and often innocence. It never ceases to amaze me, also, the incredible power that we see when other people get to be involved in the wish experience, when you see the good in people every single day. All we have to do is ask, and we get a response because everybody wants to make a difference in the life of a child.
There have been some unique wishes that I was very surprised we were able to pull off. And yet I shouldn’t say that because nothing ceases to amaze me when you put together creativity and providing hope to kids. Volunteers who give everything of themselves to help us and our donors and this community. This community is so rich with support for not just Make-A-Wish, but for every organization.