Ep 183 | Where do you turn if your child has cancer?

SPEAKER_00 0:00

Raleigh really was inspired by a young man named William who was on Dean's husband's baseball team. And so when Dean was introduced to William's mom, she basically said, What can I do to help? And I'm not making you a casserole. And the mom said, Find a cure for cancer. So no family or child have to go through this again.

SPEAKER_02 0:25

Welcome to the Voices United in Education podcast. Each week we showcase the teachers, administrators, and community members who go the extra mile to contribute to the success of every child in Escambia County. You'll meet the real people behind the titles and learn about the amazing resources to support your child's success. Of all the bad news you don't want to get as a parent, your child has cancer is top of the list. A nightmare for most, but in the U.S., it's news received about 47 kids every day. It's something that makes you feel helpless. But my next guests are part of the team from the Rally Foundation doing something about it. One is the development manager, and the other is the Rally Kid and Program Manager for Rally Gulf Coast. Today they're going to share why kids affected with cancer are different than adults and how they're working to raise awareness and resources for panhandle families. Raising awareness and rallying for every kid, Jessica Sederio and Haley Brown. Thanks for being on the show, guys. Thanks for having us. So when people think about childhood cancer, they immediately think of St. Jude. And I'm not trying to start this conversation super controversial. But with St. Jude being such a large organization, why do we need the Rally Foundation?

SPEAKER_01 1:44

Yeah. So St. Jude is one of a really great hospital that we're funding research, and we have been for several years. And so although we really pour into that hospital and we have a ton of families that travel there for treatment, there are those in-between scenarios where they don't qualify to go to St. Jude and they're having to travel out of state for treatment. And so we have a travel fund to assist with that. We have a family emergency fund to help with medical and household bills. And so we also fund research internationally and at several universities and hospitals across the country as well. And so we leave no options on the table. And we really are trying to find young investigators, people that are very early on in their career for research and really investing in them and also collaboration. We're huge with collaboration. So we have consortium grants that kind of we look to find different universities and hospitals that are working together to fund research and do those clinical trials together. So we look, I don't know if that really answers fully, but I think it does.

SPEAKER_02 2:50

So you're saying that St. Jude is, they operate differently. And I think kind of between the lines of what you're saying is not every child with cancer is an automatic in to St. Jude.

SPEAKER_01 3:03

Correct. Yes. And so, like I said, there's several other amazing hospitals. I know CHOP up in Philadelphia, for example, a ton of families have to travel there for clinical trials or just bone marrow transplant, et cetera. So they have to go out of state and find the resources for their kids. And that doesn't always equate to it being St. Jude.

SPEAKER_02 3:24

So Raleigh Foundation pays for the travel too. And that's something that makes it a little bit different. Yeah.

SPEAKER_00 3:30

I think also what makes it a little bit different is that we fund the research and St. Jude does research and they also help children with cancer as well. It's the Studer Family Hospital, Children's Hospital that we are partners with. And we have several other partnerships throughout the US as well with hospitals, but we really partner with the hospital to fill in that gap. I like to say that we are between the patient and the cause. Whereas when you're working at a hospital with maybe a child life person, the child life person is that bridge between the medicine and the child or family. So they explain that piece to them.

SPEAKER_02 4:09

So it's collaboration, not competition. With this whole ecosystem of support. Yes. Okay. So tell me more about what Raleigh Foundation does because when people hear research, I think it's two things. It's one, oh, yeah, that's important. And two, I'm no longer interested in this conversation. You know, it's like the scientific aspects of it don't really hit home. What parts of what Raleigh does would hit home for most people who maybe know someone who has a child with cancer?

SPEAKER_00 4:38

I think, like you said, one of the hard parts when someone says, Oh, we do research and like, because we're a very localized area and we want to know that our dollars are impacting the families here. And then we have community programs as well, like Milk and Cookies is an event that's coming up where Haley has all the families coming in. Santa will be there. A lot of our partners in the community will be there. They'll be decorating ornaments and cookies and have some really great music. And that piece is so important because you feel like you're on an island by yourself sometimes when you're struggling. And the families all know that island is other people that are struggling as well. And around that island is this amazing community that recognizes what they're going through. So instead of pitying them, people are empowered to be empathetic and say, What can I do to help? And I think that's so important.

SPEAKER_02 5:32

It sounds like Raleigh really covers a large spectrum of family needs because you said they're providing some meals. What's emergency fund? You said emergency fund. What does that mean?

SPEAKER_00 5:46

I'm gonna let Haley explain more of that. That's really in Haley's niche.

SPEAKER_01 5:49

Yeah. So we provide a family emergency fund here locally just for our Gulf Coast families. That's something our director and founder, Emeritus Cindy, really pushed for our office in our area to have that specifically for our families here among the Gulf Coast. And so that is an allotment of $1,500 a year per family while their child is in treatment. And so what that does is that helps cover household bills, whether that be mortgage, water bill, power bill, et cetera. So they have that funding available so long as we have money left in those funds from donors and from other allocations that we get for that funding. But that just is there, we exist to be able to help ease the burden. No matter what walk of life you come from, these families don't prepare for their child to have cancer. And so we don't have any specific income requirements for that, but all of that goes through social work and then Rallie pays the companies directly and makes sure that they're taken care of for those bills. And is that on top of the travel funds being covered? Yes. And so travel fund is completely separate fund that we have, whether it's the family has to, like I said, go out of state for a different hospital for treatment, or if they are traveling over a hundred miles back and forth to our hospital to get weekly infusions or chemo administration. So we help cover gas cards, airplane tickets if needed. We always try to get the families to get obviously Ronald McDonald House assistant if they are traveling and need lodging, but we also help with hotel stays as well, if needed for long periods of time.

SPEAKER_02 7:28

Wow, that's incredible. You work, Haley, directly with the families, right? What families in our area, what kind of specific needs do they have when it comes to having their kids having cancer?

SPEAKER_01 7:41

So, as cliche as this sounds, I guess, but every family is different. And I've known with the past two and a half years, working so closely with these families, it looks different for every single one of them. And it also looks different at different stages throughout their journey. And so we always say once a rally family, always a rally family, whether that be your child or grandchild passed away several years ago, we still have those families come to those events. And we really still love on them, love on the siblings and the family members. And we also have kids that have passed away and the family signs up to be a rally family years later, and we're there through every walk of their journey. And so really just offering that emotional support as well. Obviously, you're thrown a million different things when your child is diagnosed with cancer and you have no clue where to start. And I always put it in the family's court and whatever that looks like for them, they're they just know that we're there and we have several different resources. And I always tell family if I don't have the answer, I will find an answer. So, like I said, it looks different for each family, but I have families calling and texting me in the middle of the night if there's an update, whether that's good or bad. And we get to go to birthday parties and celebrations for the kids, but also their siblings and their family members. So I always say we do a little bit of everything, although our main focus is research, and that's something actually very tangible, whether people realize that or not. The research that we're funding allows for new discoveries, whether that be for long-term side effects that these kids are experiencing, or they're having resources be able to come to our hospital. We have research nurses at our hospital that work directly with our families and really enroll them in clinical trials, but those trials that they're a part of allow them to be able to stay home. And so when we're funding research, we're funding them the ability to stay home and also be treated at their home hospitals.

SPEAKER_02 9:42

Because cancer affecting kids is different than cancer affecting adults, right?

SPEAKER_00 9:48

Yes. For kids, it's more cellular. We're adults, it's more environmental and or as we age and that sort of thing. But for kids, it's really more of a cellular situation and the immaturity of their bodies as well.

SPEAKER_02 10:02

And the research that exists nationwide in the states, it's not for kids with cancer, it's just for adults.

SPEAKER_00 10:12

So less than 8% of all funds that are allocated to cancer research go specifically to pediatric research. So that's where we come in. 8% is not enough whatsoever. And this sounds cliche, but that's our future. And I think investing in your future is so important. And one of the things that we work really hard to do with our research is to find better treatments with fewer long-term side effects because these children are receiving treatments that are 30 and 40 years outdated, and they're meant for adults.

SPEAKER_02 10:47

30 and 40 years outdated? What do you mean?

SPEAKER_00 10:50

So I remember it's six medications were approved for pediatrics within a 28-year span. Yes. And over 200 treatments were discovered for adults, if I've quoted that right.

SPEAKER_02 11:05

So you're saying that the treatments that exist currently for children with cancer were approved 28 years ago, but most of them are just diluted cancer treatments for adults?

SPEAKER_01 11:18

So they're receiving the same type of chemo and radiation treatments that adults are. And so not at a diluted level by any means either. So I mean, you can imagine the toll it takes on adults. Imagine that being pumped into a five-year-old body. And so then kids are getting different types of cancer than adults do, completely different types of cancer. So, like she said, less than 8% of all federal cancer research funding is going towards children. I will say that has jumped up about 4% since I've started working for Raleigh, but 8% is definitely not enough for these kids.

SPEAKER_02 11:56

No, and not for 47 kids a year in the US to be diagnosed. What's that look like on a local level? How many kids in our area are getting a cancer diagnosis?

SPEAKER_00 12:10

I believe that right now they talk about 50 annually. Just in the panhandle? Just in the panhandle.

SPEAKER_02 12:17

That sounds like a lot.

SPEAKER_00 12:19

Yeah, it is. And then we have more over 200 children that are rally for kids and families that some of them are beyond their battle and many of them are not.

SPEAKER_02 12:31

Wow. Wow, that's really interesting. So where does the funding for all of this research come from?

SPEAKER_01 12:37

Majority of what we do are all grassroots fundraising. And so one program that I ever see as far as fundraising goes is four quarters for research, which is actually within the schools and little league groups around the area. And so what that looks like is really empowering the kids that are going to these schools, really seeing that community and their peers support them. So giving them opportunities to fundraise for the kids that are in their classrooms that are going through cancer, or say it's a sibling that is still able to attend school while their sibling is going through chemo and their cancer diagnosis, and really giving those kids an opportunity to fundraise and have a great time while doing it. And so we send little ziploc bags home and we encourage coin collections. Some of the schools in the area, they've really made it a competition amongst the classrooms to really get the kids excited. And that's one of my favorite types of fundraising that we do. It's really, like I said, grassroots and it allows the kids to have their peers fundraise and really rally around them for lack of a better word.

SPEAKER_02 13:42

Well, I can really see that from a psychological perspective. Like you have a kid that, Jessica, you mentioned the family's feeling isolated earlier. I mean, obviously the child who is going through the cancer is going to feel very different from their peers. They're dealing with very adult topics. Think about how much a kid going through cancer is talking with adults more than their peers, right? So their development totally takes a completely different trajectory. So to have their peers get excited and get involved in what is essentially the center of their little world at that moment. That's so major. I mean, even if the money was just nothing, like if it was just drops in the bucket, like the effort alone is such a beautiful investment in that child's world.

SPEAKER_00 14:30

And these kids try so hard to be strong for everyone. They're being strong for themselves, but they see their family members, they see their siblings impacted by it in the sense of one sibling has cancer and their attention is all focused on them, but they really overcompensate to be strong for other people. So I think that when their classmates can get involved, it brings it down to another level that humans in their community are right there with them. And I think it's very empowering for a student to support another student because when you empower kids at a young age, it affects what they're going to do when they're older. And I think that this area is really wonderful in a philanthropic sense. We teach our kids volunteerism and giving back, and then they grow into adults and do wonderful things.

SPEAKER_02 15:20

Yeah. To be others focused, I think is a part of development. So not just the kid experiencing the cancer is receiving that benefit, but like you said, the children who are rallying for the other kid that they would kind of feel what that feels like to be others focused. When it comes to funds, this is a big question everyone has for nonprofits, right? What percentage of the funds go to overhead versus the resources that go to the families?

SPEAKER_00 15:49

So 93 cents of every dollar goes directly towards our mission. And we take every dollar very seriously because your dollar could be the one that finds a cure. And then the additional three and four percent go towards admin and fundraising. And we work our fundraising model, we work very hard to ensure that 93 cents of every dollar. And I have to say that I've worked with several nonprofits, and I'm most proud of this nonprofit, obviously for the mission, but because of that 93 cents, because I know that the impact of what I'm doing and asking other people to do is really making a difference.

SPEAKER_02 16:27

That's pretty rare in the nonprofit world to have that kind of numbers. Even your office space, I heard, is donated.

SPEAKER_00 16:36

Yes. Our office space is gifted to us by Ascension. And actually, we also had a grant from Impact 100 where they helped us transform the space so that mom and dad can come in and get away from the room, maybe do some work, have a snack. And then there's another section for siblings and or kids that are able to come out of their room and they can play a game, hug a cute toy, have a tea party with Miss Haley. But it's really, it's really a space that they can come and just relax for a moment and forget why they're there.

SPEAKER_02 17:10

With a cure not necessarily being around the corner, Haley, what does a win look like while we're waiting?

SPEAKER_01 17:17

I mean, any small victory. I know our CEO, Dean Crow, she's actually been working on our research success stories through our researchers that we've been funding since the beginning. And so we're Rally Foundation as a whole is actually celebrating their 20th year of existence. And so really trying to come full circle and see what that research is doing. But we've been able to do, like I said, young investigator grants and really fund the research at a very small level, but that encourages that young investigator to continue to apply for more funding for research and really fund them at that level and really show that people have the faith in what they're doing has been huge. And so we've had clinical trials advanced because of research that Raleigh has funded. And so we also have a medical advisory board. We're not the scientists, we're the fundraisers. And so our medical advisory board really takes a deep dive into our grant applications and makes sure that we're funding research where it really matters. And so new immunotherapies have come from research that Rally has funded from the beginning. And so we're really proud to say that we try not to leave anything on the table. And to Jess's point, these treatments also are causing long-term side effects, but also secondary cancers later on down the road for these kids. We know there's a teenager in Atlanta. Her first cancer treatment caused a secondary cancer. And then the treatment from that secondary cancer caused a different type of cancer. And so she's battled three different types of cancer at the age of 18 years old. So, yeah, we try to leave nothing on the table as far as research goes and innovative ideas, like I said, collaborative grants and really just looking to find better options for the kids.

SPEAKER_00 19:06

And we really look at ourselves as seed investors as well. Our process for our advisory committee is it's a dual-peer process. And so if Haley and I were doctors or scientists and we were on that board, if she and I had any type of relation, whether we went to school together or we knew someone that went to the same school, that would tell us we can't be on that same review committee. So they really review, they look through it, they score it and they take a look at the best scores. And then that's how they narrow down their grants. So we work really hard on that piece. And it's so hard to get funded as a new researcher. So we don't want to leave anything on the table and we see a great value there. So we really want to get in first and do that. And then there also is funds that are inspired to be given through the Department of Defense, which sounds silly, but we did find that there's money there. And Haley, you speak very eloquently on this piece.

SPEAKER_01 20:00

Yeah. So our lead advocates within the advocacy world, especially for the Department of Defense funding. And so I want to say it was back in 2017, our CEO, Dean Crow, we attend Kearfest every year, which is a childhood cancer convention in September up in DC. And the kids get to go and advocate on the hill for themselves and really push through bills that are super important for these kids, whether that be for crossing state lines for insurance purposes, drug vouchers, et cetera. So anyhow, Dean Crow, she found within the Department of Defense, they have a medical research program and they have funding for cancer research within that program. And we have been able to retain funding, so over $317.5 million worth of funding since 2017, but also retaining language within the report to be sure that specific childhood cancers are listed within that bill and in that funding each year. And we're lead advocates within that space. Wow.

SPEAKER_00 21:02

And often as when you're applying for grants and you're a researcher, they want to ask, what funding do you have? And so when they can say that they're going to be funded by Rally, that also helps for them to be able to be given more dollars towards their research as well.

SPEAKER_02 21:18

I mean, Dean must be like a funding detective, because that feels like a really unexpected place. But what a great way to have consistent resources for that research. That's incredible.

SPEAKER_00 21:32

Raleigh really was inspired by a young man named William who was on Dean's husband's baseball team. And so when Dean was introduced to William's mom, she basically said, What can I do to help? And I'm not making you a casserole. And the mom said, Find a cure for cancer. So no family or child have to go through this again. So Dean took that very seriously. And she continues to take it seriously, and she leads the charge for our organization, which is super. Super inspiring because we love our rally families and we love our job. But Haley and I wouldn't mind if we didn't have this job anymore because that would mean that our kids are getting better treatments.

SPEAKER_02 22:11

Yeah. Is any of that research about prevention or causality when it comes to kids getting cancers?

SPEAKER_01 22:20

Yeah. And so, like I said, with the research success stories that we've been, I mean, Dean and one of our other employees, Callie Ruth, in one of our other cities, they've been really working hard to see what our research is doing. And so, like I said, there have been new immunotherapy drugs that have come from research that we've funded and clinical trials that we invested really early on in CAR T therapy, which is an infusion that patients receive to be able to go in and attack only the cancer cells rather than attacking the healthy cells as well. And so we've had several different things come of the research that we've funded.

SPEAKER_02 23:00

Has any of it been on the prevention, though, or causality?

SPEAKER_00 23:04

I think as far as causality goes, current science will point towards that it's a mix of genetics and biological factors. And in some cases, it is environmental as well. But primarily it's treatment-based is a strong piece where that impacts. So I think they really are looking at the better treatments because we don't want the treatments to be the reason why these kids are getting another cancer. Right. Right.

SPEAKER_02 23:29

Yeah. And I think that's an unexpected dynamic that I don't know. I would think most people aren't aware of that. Would you agree?

SPEAKER_01 23:37

Yeah. Yeah. There is a good bit of time where the kids they pass away from the treatment that they're receiving. It's not even the cancer that ends up killing them ultimately. And so when we're funding research to hopefully find better treatment options, we're looking to be able to eliminate those things from happening. And it's definitely hard work and we've got a lot more work to do. But with us being able to advocate for funding and also fund the research that we are through different fundraising events and with our community partners that support us, we truly are making a difference. But it takes a lot to make the difference. It does.

SPEAKER_02 24:10

Well, I imagine that seeing those things happen, seeing the kids that pass away from cancers or from the uh treatments of the cancers and just the whole all of it certainly makes your job have a lot of bad days. But there's probably some good days too. Do either of you have a moment that you replay and it reminds you of why you're here?

SPEAKER_01 24:32

Yeah, I will say I have so many moments that have happened with since I've started working here and with having the privilege of being so close to these families. But I think one thing that's always stuck with me is no matter how hard of a day that these kids are having, you walk in and they they want you to have a dance party in their hospital room or they want to play hide and seek in the cabinets in the hospital room. And they really are so resilient. And I say that, but I also have seen the really bad days. And yeah, there's been just unimaginable things. And that's not even the full scope of what these kids are going through and what these parents have to get their kids through. And it really takes a toll on the entire family. And there's a lot of really tough days. But the hope that I find is it's really changed my perspective on everything. When you walk into a room and a kid is hooked up to their port and they're receiving chemo, but they're dancing around the room watching Bluey or playing with Legos and trying to find any little bit of joy. And it really does change your perspective on everything.

SPEAKER_00 25:38

I think some of for me, and when you meet a child that is at their worst, especially when I first was at Rally, and then you see them ring the bell, that is just extremely impactful. We love each and every one of our families, and I mean they are more than their diagnoses, and that sounds cliche, but they really are, and it's just amazing to see both sides of it.

SPEAKER_02 26:03

Yeah, absolutely. How can people support this? Because with so many kids being diagnosed with cancer here, 50 annually, which is wild, because like 47 a day in the whole United States and 50 a year just in our area, this is relevant. Yeah. So how can we as a community come together and support what y'all are doing at Rally?

SPEAKER_00 26:27

There are several ways. If you visit rallyfoundation.org, you can hit that donate button that's always in the upper right-hand corner. But also we have opportunities to volunteer, whether it's coming into the hospital, serving a meal, or even donating a meal. And then we have our fundraising events, which we are always looking for help there. But we also have our family community events, Gold Strong Fest, Milk and Cookies, an ice cream party we have. And that's a really great opportunity to meet the families and let them know that their community is behind them.

SPEAKER_02 27:02

That's how I first learned about Rally was I was at one of those events and I had no idea. I think it was 4% at that time, it was quite a while ago. And I was just blown away. I mean, there was so much I didn't know. And it really impacted me because they told the stories of the different kids. Some of the kids were even present at the event. Is there an event in the springtime that people could attend?

SPEAKER_00 27:24

Yeah. So Rally on the Runway is March 26. And that is where we have generally six boys and six girls. We might end up having seven girls this year, but they each are either in the battle or have battled. And they get to pick their outfits from Dillard's from head to toe, and they get to be escorted down the runway with a local celebrity, Jeremy Reeves from the Commanders. He's our OG and he is there every year. He is amazing. But they get to do that and they get to say, like, hey, here I am. And the whole audience in the world gets to see that there's more than a diagnosis, there's a name attached to the amazing child. In fact, one of the kiddos last year was very quiet, wouldn't even make eye contact with you when I first met her. She was in the runway and that she owned it. She was the diva.

SPEAKER_02 28:17

She strated that runway. She sure did. I love it. That's so awesome.

SPEAKER_00 28:21

But the event's amazing because you also get to hear the stories of the kids from them and sometimes even their parents. And it's very impactful.

SPEAKER_02 28:29

I love that. I love that there's like a distant way to participate to support, but also like a in real life community way that you can show up and be a part of it. So thank you all so much for being here today. I'll be sure to link everything in the show notes so that hopefully we have a few more cheering faces in the audience at Raleigh on the Runway. Thank you, Steve. Thank you. Thanks for listening. Be sure to subscribe and share. Voices United in Education is a production of the Scambia County Public Schools.