This year’s Humanitarian Award will be presented to Jack Burke at the 2020 virtual National Celebration Concert to End NF. Jack and his family have raised millions of dollars to support the mission of CTF through their foundation, CureNFwithJack, and through their participation in the annual Cupid’s Undie Run. Jack is also an ardent public speaker influencing biotechs and perfect strangers alike to invest in our collective mission to end NF.
For Jack, living with NF has brought many challenges. Since being diagnosed at the age of two, he has had an eye orbit tumor, a brainstem glioma, eye surgery, brain surgery, and two surgeries on his foot to help him walk with less pain. He has also endured more than 52 weeks of chemotherapy, so finding a cure for the 2.5 million people who are affected by NF is very important to him and his family.
We sat down with Jack, his brother Luke, and his sister Grace to talk about what it’s like being a super sibling, which sibling is the bossiest, and how CureNFwithJack is a labor of love.
*This conversation has been edited for clarity.
Jack Burke: I am Jack Burke. I have NF, and I was diagnosed [with neurofibromatosis type 1] when I was two years old. And when I was six, I started the foundation CureNFWithJack.
Children’s Tumor Foundation: Wow. That’s pretty impressive, starting a foundation at six years old. How does that make you feel?
Jack: I think it’s really cool how we started a charity that helps me and helps a lot of other kids too. And it’s also a lot of work, but it’s for a good cause. So, I like doing that work.
CTF: Can you talk growing up with NF? How has NF impacted your life?
Jack: Well, I have had a lot of surgeries, so that’s one major impact. Also, NF also makes you smaller than other kids, also makes it harder for you to develop muscle. So I’ve always been the smallest kid in my class, and it was harder for me to do sports than other kids. It was hard for me to do other activities. So that’s how it really impacted me.
CTF: What do you think your NF journey has been like for your brother and sister?
Jack: Well, my brother Luke and sister Grace know a whole bunch more about NF than other kids! And they always go to the golf tournaments and support me at other events and through surgeries.
CTF: Can you tell us a little bit about Luke and Grace? How old are they? Are they older or younger than you? And what kinds of things that you guys do with each other?
Jack: I am the oldest. I’m 15 years old, and a freshmen in high school. My brother, Luke, he is 13 years old. He’s in eighth grade. And my sister, Grace, she’s nine, and she’s in fourth grade. We all like the same sport, which is hockey. So we play hockey a lot together.
CTF: Are they funny? What are they like as brothers and sisters? Do they tease you?
Jack: Yeah, we all fight sometimes. And they are funny sometimes, but not a lot.
CTF: Grace and Luke, tell us a little bit about yourselves, and if you have any hobbies.
Grace Burke: My name is Grace, and I’m nine years old, and I’m in fourth grade. I love baseball. I’ve played it since I was three years old. And I’ve actually recently started playing piano at the beginning of the year.
CTF: Luke, tell us about yourself.
Luke Burke: Hi, I’m Luke. I’m 13, and I am Jack’s younger brother. I’m in eighth grade, and outside of school, I play hockey and baseball.
CTF: What you know about neurofibromatosis and your brother’s condition?
Grace: Neurofibromatosis is when a tumor can grow on any nerve ending in your body. So Jack has a few on his back, one on his glioma, and one in his left eye. Some can be big, some can be tiny.
CTF: Tell us about CureNFwithJack? What is it and are you involved in it?
Luke: CureNFwithJack is our foundation, and it was inspired by Jack. My parents founded it, and we have a board, and there’s many of our friends, and some of our family on that. And we help out at the golf tournaments, and really all the events with CureNFwithJack.
CTF: How do you feel about supporting your brother in this foundation?
Luke: Oh, it’s good. We love to take any chance that we can. We can’t go to surgery for him, but we try to help out as much as we can.
Grace: We can get ice cream for him. So after surgery, we can do that.
CTF: Excellent. What’s his favorite ice cream?
Jack: Oh, I like, I like coffee with cookie dough ice cream.
CTF: How hard is it with brothers and sisters? Do you like them? Do you get to keep them?
Jack: I mean, we fight sometimes, but sometimes they’re nice. So I might keep them.
CTF: Grace and Luke, do you have any favorite Jack stories? You sound like you’re pretty nice to him.
Luke: When Jack was a little younger, like four or five-ish, he loved Johnny Cash. And he would always sing Johnny Cash in the back seat of the car. And probably his favorite song was Ring of Fire, and he would go like, “Ring of Fire.” So he loved doing that. And the movies we made, unfortunately all of those are deleted, I think, for Jack’s sake. But yeah, those were fun to do at the time. But if we looked back on him, I think we’d have a big laugh.
CTF: What do you love most about Jack?
Luke: Well, I could go on and on, but the thing I love most about Jack is probably how tough he is. And he’s really caring. He has obviously gone through these surgeries, and I had a nose surgery last year, I think. And he was really empathetic and kind through that. And he’s just really kind in general, like Grace was saying, but he’s a really tough. He’s really tough through all of his surgeries, he’s had plenty, and all the MRIs.
CTF: Does he ever share words of wisdom for you guys?
Luke: Yeah, he does. He does a lot. Even if it’s the little things, like if we do all of our chores, we get to do something. He’s always encouraging us to do that. But with more real things that are really important, he speaks a lot, he does a lot of courageous things for us too. And he really encourages us to do stuff that we’re afraid of.
CTF: As an older brother, does he ever get on your nerves? Does he ever get bossy?
Luke: Well, sometimes, but he’s not really bossy, which is another thing I like about him. So that’s good. He’s never really bossy with me, but I’m more bossy with him.
Grace: They boss me around.
Jack: You’re the youngest.
CTF: What are your plans for the future?
Jack: Well, for the future, we’re just going to do more events. After COVID is over, we’re going to have gatherings, and we’re going to have stuff other than golf tournaments. We are just going to do bigger events that potentially raise more money.
CTF: Well, thanks you guys.
Jack Burke: You’re welcome.
To learn more about CureNFwithJack, click here.
To register, sponsor, or make a donation for the virtual National Celebration Concert to End NF, click here.
