This episode is with Jane Hoppen, Director of Family Relations for the St. Baldrick's Foundation. In this podcast, Jane describes what drew her to getting involved with St. Baldrick's Foundation, how families are impacted by a cancer diagnosis and what everyone can do to fight childhood cancer.
As the largest private funder of childhood cancer research grants, the St. Baldrick’s Foundation believes that kids are special and deserve to be treated that way. St. Baldrick’s funds are granted to some of the most brilliant childhood cancer research experts in the world and to innovative explorers who bring with them the promise of a future free from childhood cancers. Kids need treatments as unique as they are – and that starts with funding research just for them.
In 2016, Sport Clips Haircuts proudly signed on as St. Baldrick’s’ first National Partner, committing to give more than $1 million in support of childhood cancer research over the next three years. In 2019, we recommitted our efforts and will donate another $1 million to the organization over the next 3 years.
For more information, visit: www.sportclips.com/sbf
| Episode Air Date |
Guest Name |
Guest Title |
Topic(s) |
| September 13, 2019 |
Jane Hoppen |
Director of Family Relations |
Providing support to kids with cancer and their families |
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Transcription:
Chad Jordan: Hey everybody. This is Chad Jordan from Sport Clips. This is another edition of our hall of fame podcast. And this is going to be part of our haircuts with heart series in which we look at a couple of the causes and partners that Sport Clips supports. One of our favorites of course is Saint Baldrick's foundation, which is all about childhood cancer research and getting funding funding for it. We've had a number of podcast guests featured with the Saint Baldrick's Foundation. We've interviewed Kathleen Ruddy, the CEO. We've had a couple cancers survivors. We've had the mother, Robin Raphael, from Saint Baldrick's, a mother of a young boy who died of cancer and very passionate about this cause.
Sport Clips was the first national partner with Saint Baldrick's Foundations, and we pledged a million dollars back in 2016. Over a three year period, we fulfilled that, and then have re-upped and done it again. So, we're very pleased with our partnership and with the work that they're doing. Many of our stylists across the country participate in Brave the Shave events where they'll go, and there'll be on stages and in rooms of screaming people cheering the shavees on. Stores around the country do raffles. They do all sorts of fundraising efforts for Saint Baldrick's. So, Sport Clips and Saint Baldrick's go together like a hand and glove.
So, I wanted to put a face and a voice to Saint Baldrick's Foundation to the podcast, so I'm very pleased today ... I'm going to go ahead and have my guest introduce herself, what her role is at Saint Baldrick's, and we're going to get into some of the details of what the foundation does.
Jane Hoppen: Chad, thanks for having me. I'm Jane Hoppen. My official title is I'm the director of family relations for the Saint Baldrick's Foundation. I just celebrated my 13th anniversary with Saint Baldrick's.
Chad Jordan: Wow. Saint Baldrick's has been around how long?
Jane Hoppen: Well, the foundation became an independent foundation in 2005. So I joined in 2006. I have a staff member number seven, which is hard to believe.
Chad Jordan: Lucky seven. Man, you're lucky to be.
Jane Hoppen: That was a good number, right?
Chad Jordan: Yeah,
Jane Hoppen: And June 19th was my anniversary, so not too long ago.
Chad Jordan: Very cool. I know you've seen a lot in your 13 years, a lot of progress. You've influenced a lot of it obviously. Can you give a rundown on what ... You had a fancy job title, director of family relations. Can you give me an explanation of what that role does, what you do at Saint Baldrick's?
Jane Hoppen: Sure. Well, I'm not much of a title person to be honest with you.
Chad Jordan: Okay, great. We'll throw that out.
Jane Hoppen: But I think I have the best job at the foundation, personally. I get to work with a great team of people that get to interact and support kids with cancer and their families on a daily basis. That's what we do in a nutshell, welcome them, encourage them to tell their story so that we can share their story to inspire other people to get involved.
Chad Jordan: Are these kids and families that have been diagnosed and are already involved in a Saint Baldrick's event, or you are aware that they've been diagnosed and you reach out to them? How does that work?
Jane Hoppen: So it kind of runs the gamut really. We have not quite 6,000 active honored kids and families that are registered on the website. Have a site where they can showcase their story in a nutshell, photos, videos. And also I think it's really cool to show where other events and participants, teams, fundraisers can honor them, can link back [crosstalk 00:03:46].
Chad Jordan: An honored kid, what qualifies someone to be an honored kid?
Jane Hoppen: That they are a child with cancer, whether they are living, whether they are deceased, whether they are in treatment, whether they are an adult now and they were in treatment decades ago, they are still an honored kid with the foundation.
Chad Jordan: And honored kids with honored families. That's any family member that is part of that network?
Jane Hoppen: Absolutely. I mean this isn't ... There's a child who has cancer and is going through treatment, but it impacts the entire family, siblings, parents, extended family. And certainly we want to make sure we recognize that as well.
Chad Jordan: So then can you walk me through what a typical, not a typical day, but how the process gets initiated, what kind of support that you're providing, kind of those details?
Jane Hoppen: Sure, absolutely. So people register their kids on our website to be an honor kid. Obviously, you have to go through the process of kind of setting up the basic information. And certainly we want to make sure they sign a release that it's okay that we share that information. But they hear about it through a variety of ways. A lot of it is, "My neighbor is shaving his or her head in honor of my child, and they want me to sign my kid up. So, let me learn more about what you do." We also help with the Children's Oncology Group, which is the largest group of more than 230 institutions that treats 90, 95% of kids with cancer in the US. We provide their patient handbook that goes out to every newly diagnosed family at the hospital, and there's information about Saint Baldrick's there. They hear about it and they're like, "Oh, my kid is ... " You're thrown into this world. You're trying to figure out what in the world is going on. And then they're like, "Oh, this is something that I want to do. I want to get involved."
I was talking with a family, not too long ago, out in Colorado and I said, "How did you hear about it?" And they said, "Well, our daughter was recently diagnosed, and obviously we were trying to figure out how to get from point A to point B every day." And they said, "Hey, just want to give you a heads up. You're probably going to start to see a lot of people who had hair who no longer have hair walking around the hospital. Let me tell you why." And they said, "This is Saint Baldrick's. This is something that ... They support us as an institution."
Chad Jordan: So actual staff members?
Jane Hoppen: Staff members, the doctors and stuff. And they're like, "I need to look into that." So, sometimes come to us that way, through connections with their doctors, which is certainly incredibly meaningful as well. Or they just hear about it. Maybe they don't have someone they know who's shaving or participating in an event, but they see one nearby and they think, "I want to look into this."
I've been with the foundation since 2006, but I started as a volunteer in 2004, so my history goes back prior to my time as a staff member. I'll never forget one of our first events we had here. It was March of 2006 downtown Raleigh at the Hibernian.
And there were a couple of families who came, and one mom just started crying. I was like, "What's going on?" She's like, "I can't believe all of these people don't know my baby, who is in the hospital right now, but they're doing this for her." That's pretty powerful, right? That's pretty powerful.
Chad Jordan: What got you to volunteer back '04? I mean, was there a connection?
Jane Hoppen: Fortunately, no. Fortunately, no, not a personal connection. So, I went to Carolina for college.
Chad Jordan: So you're a Tar Heel?
Jane Hoppen: I'm a Tar Heel.
Chad Jordan: Okay, you can stay on this podcast then.
Jane Hoppen: I'm allowed to stay?
Chad Jordan: Right. Yeah, if it was was Duke or NC State, you were going to have to go.
Jane Hoppen: It would be questionable, right? We would've said, "Thanks, but you got to run." I was a psychology major, of course. I'm sure my parents were thrilled with, "Great. What are we going to do with this?" And so, like all good psychology majors, I ended up working in insurance, right? Because that's just the natural progression, right?
Chad Jordan: Mm-hmm (affirmative). Yeah, it's like your transition. Yeah.
Jane Hoppen: But I made my way back to the triangle area. I ended up working for a company called the Redwoods Group, which at the time was the largest provider of insurance for YMCAs, hard to insure market. And, lo and behold, one of Saint Baldrick's founders, John Bender, happened to be our reinsurance broker. And he was in town negotiating the reinsurance treaty, really exciting stuff, right?
Chad Jordan: Mm-hmm (affirmative). And he's from New England?
Jane Hoppen: New York.
Chad Jordan: New York, okay.
Jane Hoppen: And I remember he called all of this, like everyone in Redwoods into our conference room. And at this point, Saint Baldrick's new. The first event was in 2000, so it was not very old, right?
Chad Jordan: Yeah, it's still getting off the ground.
Jane Hoppen: And not an independent foundation at that point either. And he said, "I appreciate you all supporting this head shaving thing I do called Saint Baldrick's, and you're lucky you have Duke and UNC in your backyard. That if you have a kid with cancer, you have someplace close you can go for treatment. But I don't want your money anymore." We're like, "Okay."
Chad Jordan: "Okay. Great, we'll keep it."
Jane Hoppen: He said, "I want you to have an event. You need to have an event. And I'm not going to get on a plane and go back to New York until somebody says they are going to organize an event." And this was winter-ish 2003, I believe, right? So my friend Joe Kauffman, now at [inaudible 00:09:12] at the time, and I said, "Well, we'll do it. Why not?" And so we did. We, along with the support of tons of people at the Redwoods Group, helped organize our first event that we had here.
Chad Jordan: And it was a shave event?
Jane Hoppen: It was a shave event. We had 19 shavees on March 17th, because then we determined it had to be on St. Patrick's Day, right? At a little pub, [WB Yeats 00:09:35] that no longer exists anymore in Chapel Hill. And we shaved 19 heads, raised a little over $41,000.
Chad Jordan: And you were tickled pink.
Jane Hoppen: Tickled green.
Chad Jordan: Yeah, okay. There you go. I like that. But I mean that's a big deal, a big amount of money for your first.
Jane Hoppen: Sure. It's huge.
Chad Jordan: And I bet it's gotten bigger, better. There's been other events around here since then. That was the start of it.
Jane Hoppen: Well, Kevin Trapani was the CEO of the Redwoods Group that shaved. And David Hall was my boss, and we had some big hitters who were shaving. But yeah, I mean that kind of started it. And then we moved to Raleigh in 2005 and had an event there. And then 2006, we ended up with two events. And then it just has grown and grown and grown. I don't deserve the credit for that. Jill and I helped start it with everyone from Redwoods, but deserve the credit for that.
Chad Jordan: But you took an important first step, which is part of the reason for this podcast, that I wanted to have you on, is there are people either watching on YouTube, hi, or listening to the podcast that are wondering, "What can I do? What kind of impact could I make?" You were a yes. You said, "Yes, I'll do it. I'll take that first step." And, hey, I don't know what would have happened if you guys hadn't, whether somebody else would have, or if it would have fizzled, or who knows? It's certainly the ripple effect of what you guys were part of. And at Sport Clips, that's what we kind of teach and want to broadcast out to our teams and our team members, "Just get involved. Do something. You never know the impact that you're going to make." And that seems to be the case with you.
Jane Hoppen: Well, and I'm going to tell you a little story about how we kind of really blew up in 2006.
Chad Jordan: Yeah, please. Love it.
Jane Hoppen: I won't forget that. I'll come back to it in a second. But I think something you said there is really important. Because when you see a problem that just ... It seems so difficult, so big. And you look at kids who are sick and you think, "God, this is still the number one disease killer of kids in the United States," it's easy to look away. It's easy to think, "That is just too much," right? But it's that little by little, the little thing that everyone has the power to do something, right? At your stores and stylists and your Sports Clips team in general take a little bite, and that little bite adds up. All right. I can't carry a tune in a bucket, and I remember ... But you know, when you're in elementary school, everybody sings because it's really cute when all the kids see off key?
Chad Jordan: Mm-hmm (affirmative).
Jane Hoppen: But one of the things I remember, the song we used to sing is, "Little by little by little big things get done," and that's what we're doing, right? In 2005, I happened to be at an event for another cancer related organization.
Chad Jordan: And this is prior to your Saint Baldrick's work?
Jane Hoppen: This is prior to working for the foundation, but not prior to my work with Saint Baldrick's.
Chad Jordan: Got it. Okay.
Jane Hoppen: And one of the women kind of headlining the event, or at the event, was Sharon Delaney McCloud. At the time she was one of the main anchors on our ... was then the NBC affiliate. Never met her before in my life, certainly knew who she was, but she had a daughter, Macie, who was diagnosed with AML and was in the middle of treatment. And I went up to her at that event, and I introduced myself. And I said, "You don't know me from anybody, but this is what a group of us are doing to help fund childhood cancer research. And when and if you are ready, I'd love to talk to you, and we'd love to honor Macie."
Chad Jordan: Do you remember how old Macie was at the time?
Jane Hoppen: Macie was diagnosed when she was six months old.
Chad Jordan: Oh my gosh.
Jane Hoppen: She passed away when she was 10 months old.
Chad Jordan: [inaudible 00:00:13:38].
Jane Hoppen: Not long after Macie's death, Sharon and I connected. She's just an amazing person. She's like, "I'm on board. What can we do?" And then I shaved my head the next year. I shaved my head in 2006. She helped to get Niall Hanley, who owns the Hibernian and a ton of other restaurants, who's Irish, and Sharon's got Irish roots. That didn't hurt ... on board. And that whole team really helped embrace and grow all the events here. So really, really remarkable. So, often you kind of look back and you think, "Gosh, how did that happen?" But then you see all those stars and things kind of align.
Chad Jordan: Connections, yeah.
Jane Hoppen: And those connections. So, really, really grateful for for them. And really that takes it larger to families who are willing to say, "Share my child's story."
You were asking me a minute ago, and I said I'd get back to it, kind of like a typical typical day and what we do. We make it very clear when we're talking with families that we fund research. That's what we do. We are part of the puzzle of the whole childhood cancer landscape, if you will. So, families know upfront when they're coming that they are here to help inspire other people to get involved, that we're not going to be able to help in other capacities, but we can hopefully maybe help navigate you on that journey in other ways, but they get it. They get the need for research. They live it every day, for those clinical trials, for that hope. That if you relapse and you think ... You don't want to hear, "There's nothing else we can do," right?
Chad Jordan: Yeah.
Jane Hoppen: Or you are signing those mountains of paperwork for the poison, in a lot of ways, that you're giving your kid. And that just ... I can't imagine how overwhelming that must be. And to know that they can come and say, "Our ultimate goal is to be out of business. We want to be able to close those doors."
Chad Jordan: You'll get back into insurance.
Jane Hoppen: Well, I don't know about that. That remains to be seen, right? But hopefully I'll have the luxury of being able to do something else from the perspective that we've closed our doors because we've done that. We're not there. We've got a heck of a lot of work to do. And that's where we are so grateful to Sport Clips for being our national partner and being a true partner in this. I mean, you said more than a million dollars. More than 1.1 million. Don't shortchange that 0.1, right?
Chad Jordan: All right. Okay. I'm not a numbers guy, but yeah.
Jane Hoppen: I know, but that 0.1 is important, right? And to join us and then to continue and say, "We're going to continue to do this," says a lot about Sport Clips in general, your culture as an organization. I've been fortunate enough to have work with Matt Lewis, who I mentioned the other day. Gosh, he's been a help and go-to for over a decade.
Chad Jordan: And Matt Lewis is an AD and a team leader for those that are listening that might not know who he is, in the Raleigh area, but North Carolina.
Jane Hoppen: I think it's kind of fitting. As I was driving here today, realizing that we are a stone's throw from where the Carolina Hurricanes play hockey. And the Hurricanes are supported by Sport Clips as well. And we've been doing a head shaving event there as well for a decade.
Chad Jordan: Oh cool.
Jane Hoppen: And you imagine, outside the arena, you've got a stage set up and a dozen chairs, typically all Sports Clips stylists lined up, ready to shave heads. So, our our support and appreciation for Sport Clips here in the triangle area goes back further than our national partnership as well.
Chad Jordan: That's amazing. What are some ... Can you share any stories of personal connections with either honored kids, honored families, some of the impacts that you've seen over the years?
Jane Hoppen: Yeah, absolutely. I mean, that's an easy thing to do. It's harder to narrow down which ones, right?
Chad Jordan: Give me your top three, if you can.
Jane Hoppen: Top three? That's asking me to rank. I don't know about that. Well, let me-
Chad Jordan: Give me any three, any couple.
Jane Hoppen: Okay. Let me tell a little side note, and then that'll tie into that.
Chad Jordan: Okay.
Jane Hoppen: That I think really kind of drives what I hope is our goal on the family relations team and why I think it's so important.
Chad Jordan: Yeah, great.
Jane Hoppen: We were fortunate enough, Saint Baldrick's was, to partner with Stand Up To Cancer to form the first ever pediatric cancer dream team. And back in 2010, I was able to go to a Stand Up To Cancer show. And as I was ... I was at LAX getting ready to fly back to Raleigh-
Chad Jordan: And Stand-Up With Cancer, like the comedy-
Jane Hoppen: No, Stand Up To Cancer that funds research all over.
Chad Jordan: Got it, so it's not like a fundraiser from Hollywood Stars.
Jane Hoppen: Right, not exactly. I mean, the entertainment industry foundation does a lot with Stand Up To Cancer. But having that dream team have just done remarkable things for immunotherapy.
Chad Jordan: So they're like an advocacy group? What's the dream team itself?
Jane Hoppen: The dream team is what Stand Up To Cancer would fund. So they say, "We're going to put together this dream team. We're going to give you a pot of money. And we want to see results," right?
Chad Jordan: Gotcha. All right.
Jane Hoppen: They've done it in different types of cancers, but with pediatric cancers, we were their partner go-to with that.
Chad Jordan: Okay, got it. You're in LA ... Sorry.
Jane Hoppen: I'm in LA. I'm at LAX. I'm flying home. And I'm just kind of looking around the gate, waiting to board. And I see ... I'm like ... Someone looks kind of familiar, and it was Elizabeth Edwards. You know who Elizabeth Edwards was.
Chad Jordan: Yeah. The wife of-
Jane Hoppen: Of John Edwards-
Chad Jordan: Running for president.
Jane Hoppen: President.
Chad Jordan: Yeah.
Jane Hoppen: Based here in Chapel Hill.
Chad Jordan: And she had cancer.
Jane Hoppen: She had breast cancer. She had been at the show, and she was wearing this trench coat kind of thing. And I almost didn't recognize her, but I could see kind of through the top of her Stand Up To Cancer shirt. And she was on the show briefly. So I went up, and I introduced myself and told her about Saint Baldrick's, what we do. She asks about my kids, told her about my kids. And she said, "What can I do to help?" This was September, 2010. And she's like, "We've got to do something to help." And then we kind of went our separate ways. She was seated closer to the front of the plane than I was.
Chad Jordan: Right. Yeah, okay. I can imagine.
Jane Hoppen: I get off the plane in Raleigh. I'm walking. Ended up ... She was moving slower than I was, and I ended up walking beside her. And I'll never forget. She looked at me and she said, "Keep up the good fight. These kids deserve it. You are doing important work."
Chad Jordan: Wow.
Jane Hoppen: "Do that. And then go home and hug Andrew and hug Ella. That's what you need to do." Two months later, she was dead.
Chad Jordan: Wow.
Jane Hoppen: And the reason I tell that story is because after she died, I had read some of the stuff she'd written, but I hung onto this quote. And I printed it out because I didn't want to do her a disservice by not saying it correctly. But this sums up a lot of what I think we do with our families, try to do with our families, and why it's so important. And side note, she had lost a son in a car accident at the age of 16, so this was something that's kind of top of mind for her. She said, "If you know someone who has lost a child and you're afraid to mention them because you think you might make them sad by reminding them that they died, they didn't forget they died. You're not reminding them. What you're reminding them of is that you remember that they lived. And that is a great, great gift."
Chad Jordan: Yeah.
Jane Hoppen: I think of that every single day, every day. And so that's kind of my philosophy when you're talking with a family, especially a family whose child has died. First thing I want to do is say that child's name because we are honoring their life. And if a family of a child who has died or been through the horrors of cancer treatment is entrusting the Saint Baldrick's Foundation with their story, then we owe them to get it right, to do right by them. And so that's kind of a guiding philosophy for me. And what I try to share with others too, if I have the opportunity to do, cancer does not define these kids. It's not who they are. It's a part of their story. It's a part of their journey, but it's not who they are. It will forever be part of who they are. But what these kids want to be able to do is just to be kids.
Chad Jordan: Right.
Jane Hoppen: Right? And that's what Saint Baldrick's is existing to do. We can't keep them from getting cancer, but what we want to do is get the money in the hands of the brilliant researchers who are going to find those better treatments, those less toxic treatments so they have less longterm side effects, and those cures. I get to ... As I said, we have about almost 6,000 honor kids and families. I have the privilege of working with our ambassadors, typically we have five ambassadors a year.
Chad Jordan: Okay. What's an ambassador?
Jane Hoppen: So ambassadors are usually families that, stories that we highlight more throughout the year, that we pitch their stories more to national media, that we are following them throughout the calendar year of what's going on in their lives, and really having people have a face.
Chad Jordan: Providing updates. Yeah. And then they've agreed to, "Hey ... " Kind of give more access and more information to you and keep you in the loop more?
Jane Hoppen: Yeah.
Chad Jordan: Okay.
Jane Hoppen: And they're willing to do that, obviously, right? So, Justin Miller was a kid who from Colorado who's one of our ambassadors. And Justin fancied himself quite the celebrity, and he was.
Chad Jordan: How old?
Jane Hoppen: Well, Justin passed away when he was-
Chad Jordan: How old was he when he was an ambassador?
Jane Hoppen: Oh my gosh. Well, Justin had been involved with Saint Baldrick's for, gosh, many years. He was a 2000 ... Sorry, Lori, Justin's mom. I'll have to look to exactly see what year it is.
Chad Jordan: We can always edit this part out and just have you answer the how old he is.
Jane Hoppen: He was a 2013 ambassador, I think. We can double check on that.
Chad Jordan: Okay.
Jane Hoppen: But he died in 2014. He had neuroblastoma.
Chad Jordan: So his last year, he's being an ambassador?
Jane Hoppen: Do you want me to look it up really fast?
Chad Jordan: No. No, I'm fine.
Jane Hoppen: We'll edit this part a little bit.
Chad Jordan: Maybe, we'll see.
Jane Hoppen: Lori's like, "Come on, Jane." Justin was involved with Saint Baldrick's for many, many years before he became an ambassador. And then, but he passed away in 2014. He fought neuroblastoma on and off for eight years. And he was just one of these kids that didn't remember not having cancer, right?
Chad Jordan: Yeah.
Jane Hoppen: And it was always something. It was always one fight after another. But Lori, his mom, would say, "We always had hope. We always had research. We always needed the research to stay just ahead of Justin." Eventually that didn't happen. But Justin called me his agent. I was Agent Jane. He was like, "What's my next show, Jane? What's my next thing that I'm going to do?"
Chad Jordan: Oh, because you're gigging him. You're booking all these gigs for him to go speak. And he was like a star.
Jane Hoppen: He was a star.
Chad Jordan: Yeah, I believe it.
Jane Hoppen: He really was. I was in Washington, DC just a few weeks ago. And we were there for an advocacy event and a head shaving event. And we'd do these things called faces of childhood cancer where there's eight and a half, 11 sheet of paper with a photo, a couple of photos and different bio information. And we did one on Justin, and I snapped a photo and texted his mom. And I said, "Once an agent, always an agent. He's here representing today, as always." He was just such a remarkable kid and had such an impact on so many people, and still does.
Chad Jordan: I had the opportunity to interview Scott. He's a 10 year old, getting ready to be 11. And he seemed to light up when he began to speak about childhood cancer and the research that's needed. In fact, at the end of the podcast, his interview, I say, "Hey, do you have anything else that you want to add?" And I was expecting him to ... I had all this root beer for him, all this kind of stuff. I expect him to be ... And it was, he had a statement, kind of a mission statement that he wanted to say about the importance of doing whatever you can, whatever it takes, even if it's a dollar, that kind of stuff. And I was just so blown away by his poise and the fact that he's willing. I think a lot of cancer survivors and people going through cancer feel like they have a mission to give back and to make sure that everything is done that can be done to stop it, to stop cancer. And it sounds like Justin was wired the same way, and some of these other ambassadors and honored kids that you've come across.
Jane Hoppen: Yeah. Well, Caroline Richards is another example. She was a 2015 ambassador who died just a few days into her ambassador tenure, osteosarcoma. And I was on the phone with her, I guess it was December. And before she passed away in January of 2015. What were we talking about? Her hedgehog, Herbert the hedgehog. Right? All she wanted was the hedgehog.
Chad Jordan: Yeah, just a kid.
Jane Hoppen: Just a kid, right? I mean, she's 12. I have a ... My son just turned 12. That's a different sort of perspective there for sure. I've just met some just remarkable, remarkable people that are like family as a result of getting to do what I do.
Chad Jordan: Yeah. I just mentioned Scott, the importance of funding. So, my brother had the same exact type of leukemia that Scott had been diagnosed with, at the same time. My brother was three. Scott was three when he was diagnosed. And Ryan, my brother, was in the '80s, so there just wasn't ... weren't many options for him. Whereas, Scott, now these 30 some years later. He had a head full of hair. He's 10 years old. He's been out of treatment for four years. He's ... I called him the after picture. My brother was the before. And for me, just such a great reminder of what can be done. It won't be done overnight, but the funding that has gone towards the research and the way it's paying off for many of these kids now is tremendous.
Jane Hoppen: I think that's a really important thing to mention because you certainly don't want to negate any of the progress and stuff that's been made. It's important to realize when you're talking about, a lot of stuff has happened in, you know, acute lymphoblastic leukemia, but when you're talking about childhood cancer, you're not talking about a singular disease.
Chad Jordan: Exactly.
Jane Hoppen: Childhood cancers as plural. It's easier to kind of lump it one in some senses when you're doing big picture of discussing. But 12 main types of childhood cancers, dozens of subtypes within them, some that have no cure today, and many that don't have the cure rate or success rate of certain types of leukemias. So we want to celebrate that, and we want to highlight that. We want to show, as you do, the important ... how progress has been made. At the same token, understanding and stressing the importance of, "We've got a long way to go."
Chad Jordan: Yeah. What have you seen in your, speaking of time, in your 13 years almost at Saint Baldrick's?
Jane Hoppen: 15, if you count that volunteer time.
Chad Jordan: Yeah, the volunteer couple years. What are some of the big changes that you've seen? whether it's in cancer research, whether it's in the foundation itself. I mean, obviously it doesn't look like it looked 13 years ago, 15 years ago.
Jane Hoppen: Everyone was working from their home back then. I'm still working from home. That's a great thing. But everyone was working from home, and there wasn't an office to go to.
Chad Jordan: There wasn't a headquarters.
Jane Hoppen: There was not a headquarters. And so that certainly transition has changed. We've moved offices a few times, certainly a lot more, a lot more folks, a lot more teams and departments. When you've got seven people, you all do a little bit of everything.
Chad Jordan: Yep. Yeah, I work for a marketing department. That sounds a lot like that. So, you're all doing extra duties.
Jane Hoppen: So, certainly having kind of grown up a little bit, growing up and starting to kind of formulate those different teams and different things that outreach, head shaving certainly still remains the bread and butter of Saint Baldrick's, but there are many other ways for people to get involved and teams that kind of help facilitate that, teams that work with different participants directly, not just with our volunteer event organizers, our VEOs. So that certainly has changed. The rise of immunotherapy, I think that's such a buzzword in the cancer world, but the development of that to really ... for relapsed neuroblastoma, not neuroblastoma, for relapsed kids with leukemias especially. To be able to harness the body's immune system to then fight the cancer is amazing. And that's something that has really made a difference. We had an ambassador just a couple years ago, Zach Swart, who was treated on a trial that Saint Baldrick's helped fund. And he is now, just turned 18.
Chad Jordan: Oh, great.
Jane Hoppen: He had went through-
Chad Jordan: I was bracing myself.
Jane Hoppen: No, no, no!
Chad Jordan: What happened?
Jane Hoppen: No, Zach is doing amazing. He relapsed twice with leukemia, ALL, and it just kept coming back. He called it the beast, and it was a beast, and it kept coming back. And now he is ... He's doing great. He just graduated from high school.
Chad Jordan: Amazing. Oh, great.
Jane Hoppen: He's going off to college. Probably, I think he's moving in ... It might be this weekend that he's moving in.
Chad Jordan: Oh, tremendous.
Jane Hoppen: He's able to fish again.
Chad Jordan: He's taking his childhood back as a young adult.
Jane Hoppen: As a young adult. And he's doing great.
Chad Jordan: That's amazing. I one question I always think when I sit down with somebody that works for Saint Baldrick's is, how do you ... There is loss that happens in a lot of the relationships that you guys have formed. So, how do you guys cope? How do you guys get through knowing this is part ... Saying, "Part of the job," is giving a disservice to it because it's part of your life. So how do you brace yourself for knowing at any moment, you could get a phone call and it's an ambassador, an honored kid or somebody?
Jane Hoppen: You're just ... You try to come, practice everyday, from a place of being grateful for what you got. Grateful for those ... For me, grateful that I have two healthy kids. And knock on whatever that that will continue. I think you honor those who have died by continuing to live.
Chad Jordan: Oh, I like that. Yeah.
Jane Hoppen: And continuing to do all that you can to make sure people don't forget them, but that more importantly, that you are continuing to contribute to all of those great things, the cures, the less toxic treatments. Listen, I do not have a scientific mind, as you can tell. I can't remember certain dates and certain things, but I remember people, right?
Chad Jordan: Yeah.
Jane Hoppen: And that's what is really, really important. I cannot ... You're not going to ... Saint Baldrick's is not going to fund me to go into a lab. That would be a very poor decision, but I can do something to help fund those people that are doing that every day. And that's a calling for them, I believe. I truly believe if you're going to be a pediatric oncologist or researcher in this field ... It's a small community overall when you're looking at kind of the research landscape and the medical landscape as a whole. Can't forget everything that they do every single day.
Chad Jordan: And I think there's calling for every single person that's at Saint Baldrick's to do what you guys do.
One of the things, as I wrap this down, when you were mentioning Elizabeth Edwards' quote, and then my own family history with burying my brother, Ryan. So my parents live in the same town we live in. And I have two girls. And I have a son. And my son is Ryan Michael Jordan, named after my brother. And he is the only ... My sister has three girls. I have two girls and a boy. He is the kid, you believe it? The only son that I ... only grandson my parents have, and just happens to be named after their son that they buried. So if you don't think he's the most spoiled kid you've ever met, by his grandparents who get to call him the name of their own son, you're right that it's something special.
Jane Hoppen: It gives you goosebumps. It really does. It gives you goosebumps.
Chad Jordan: That is something special. So, being able to talk to parents that are grieving, but being able to bring up the memory of their kid, their son or daughter that passed, it's nothing to to be ashamed about or walk on eggshells around. Make sure that you honor that memory. I think that's a great lesson from the podcast today.
Jane Hoppen: Thank you.
Chad Jordan: Thank you for all the work you're doing, not just for carving out time for me today in a hotel conference room in the Cary, North Carolina area, but yeah, for everything that you and your team are doing. Keep it up. Keep up the good work. If you keep it up, we'll keep it up on our side.
Jane Hoppen: We'll hold you to it, all right?
Chad Jordan: Oh shoot. I just ... I don't know if I-
Jane Hoppen: That's a deal. I think you just did. You're going to edit that out.
Chad Jordan: No, I'll keep it. If guys keep going, I'm sure we will too, and appreciate the partnership.
Jane Hoppen: Well, we don't have a ... There's no choice. We've got to keep going.
Chad Jordan: That's right. But hey, we're trying to get you out of a job, right? Out of this job at least.
Jane Hoppen: That's right. We've got to keep going.
Chad Jordan: So, we're going to do that.
So, thank you so much for your time today. Thank you everybody for listening. And don't forget, September is Childhood Cancer Awareness Month.
Jane Hoppen: I was going to mention that. It is Childhood Cancer Awareness Month.
Chad Jordan: So, do whatever it takes to make a little bit more effort, to fundraise, raise awareness, Brave The Shave events. There's a lot going on right now.
Jane Hoppen: There are going to be a lot of opportunities in the Sports Clips too, to get involved, and we really appreciate it.
Chad Jordan: Yep. Well, it's our pleasure having you on, so thank you for joining us.
Jane Hoppen: Thank you, Chad.
Chad Jordan: And tune in next week for another episode. Thanks everybody.