September 2, 2026 | 28 mins

In this episode, Stacia Wagner from the Children's Brain Tumor Foundation shares the foundation's history, mission, and the comprehensive support programs they offer to pediatric brain tumor patients and their families. We explore the importance of long-term care, family support, and the innovative initiatives designed to improve quality of life and survival outcomes.

Resources
Most common medical terms relating to the brain tumor experience: rewired-minds.com/terms
Brain tumor organizations: https://www.rewired-minds.com/braintumorresources

Connect with Rewired Minds
Website: rewired-minds.com
Facebook: https://www.facebook.com/RewiredMindsPod
Instagram: @rewiredmindspod
LinkedIn: https://www.linkedin.com/company/rewiredminds

Connect with Children’s Brain Tumor Foundation
Website: https://cbtf.org/
Facebook: https://www.facebook.com/CBTF.org/
Instagram: https://www.facebook.com/CBTF.org/
TikTok: https://www.tiktok.com/@cbtf_org
LinkedIn: https://www.linkedin.com/company/cbtf/

Be a Guest
Interested in being a guest on a future episode? Visit rewired-minds.com/guest for more information and to submit your request.

Disclaimer
The stories shared here are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation. Most importantly, take care of yourself as you listen and process.

Transcript
Bri (00:06)
I'm Bri Salsman, a brain tumor survivor and identity integration coach, and you're listening to Rewired Minds, a podcast that shares brain tumor stories that change us. Sometimes guests use medical terminology, so I've partnered with Northwestern Medicine Malnati Brain Tumor Institute to provide definitions of common terms. You can find the full list in the show notes. Most importantly, take care of yourself as you listen and process.

Bri (00:29)
Today, I'm spotlighting the Children's Brain Tumor Foundation with Stacia Wagner, who is the current president. CBTF was founded in 1988 by a group of dedicated parents, physicians, and friends to improve the treatment, quality of life, and the long-term outcome for children with brain and spinal cord tumors. They do this through research, support, education, and advocacy to both families and survivors.

They support families from the day of diagnosis and throughout the brain tumor journey. They are covering a lot of territory for pediatric patients and their families. This is Rewired Mind's first pediatric organization spotlight, and I'm thrilled Stacia is joining us to share more. Hi, Stacia, how are you doing today?

Stacia Wagner (01:16)
Hi, Bri. I'm doing great and we're so excited that you are bringing a voice to the pediatric brain tumor community with us.

Bri (01:25)
I feel like I should be thanking you because CBTF has been around way longer than I have. I mean, 1988, you all have a ton more experience, lots more reach, more impact, results, everything, which I'm super excited to get into today. But I'd love to hear what is the origin story for CBTF? How did this even come about?

Stacia Wagner (01:47)
Bri, I think what I owe a huge thanks to are the founders and many of them are still involved with CBTF. So originally the parents and professionals who founded CBTF were desperately searching for a cure and a community for brain and spinal cord tumor families. The organization focused on the New York City area where even with stellar hospitals, families were reaching out to the National Cancer Institute to investigate current protocols. And they often felt they were the only families experiencing the heartbreak of hearing, ‘your child has a tumor.’ What they realized quickly is that this was a problem nationwide and they expanded to a national organization within the first couple of years of its founding.

And at that time, CBTF was supporting promising basic science research, funded many projects which would lead to advances in treatment. But in the early 2000s, CBTF worked with a group whose primary mission was to avoid research occurring in a silo. So CBTF founded the Children's Brain Tumor Network, which is the world's largest access open ecosystem of pediatric brain tumor data, tools, and expertise consisting of 37 primary and satellite institutions and currently supports hundreds of research projects worldwide. So that's a little about our medical research and what we support both to look for a cure and to eliminate devastating late effects.

But what makes us really unique is what you brought up earlier, our dedication to the creation of family programs to address the multitude of late effects and the isolation families feel from the very beginning.

Bri (03:34)
Wow, that's amazing. I know we're going to dig into each of these further, but going from local in New York to national within just a matter of years is impressive. I had mentioned in the beginning, this was a collection of people who came together to bring this to life. What was the impetus of it? Why then?

Stacia Wagner (03:59)
The survival rate was nowhere near what it is currently. There have been advances in survival rates, but the late effects were not even talked about. Basically, your child has a brain tumor, surgery, treatment. you're cured, move on. Although they didn't really use the word cured, but people didn't even know what the standard protocol was. And like I said earlier, they would write to the National Cancer Institute, the National Cancer Institute would mail back, here's what the protocol is. And by that time, things had already changed. So there was no way of knowing. They weren't able to search the internet. They didn't know what was going on in the research world. And they really didn't know what to do after they left the hospital.

And this was a group of New Yorkers who had resources who were able to do investigating that maybe others weren't and they thought if we can't find each other and we can't find answers, what is everybody else doing? And we want to make sure no one is doing this alone.

Bri (05:04)
And you mentioned, late effects. For those who don't know what that means, can you just can you explain that a little bit?

Stacia Wagner (05:11)
Sure, and this is really what makes brain tumors unique as opposed to other types of cancer. After the treatment ends, it may be surgery related, it may be chemotherapy, it may be radiation, but there are a multitude of changes that may happen, cognitive changes that aren't noticed for a couple of years when children are young and diagnosed as they require more complex thinking. Parents notice less short-term memory, reduction in executive functioning skills. So those weren't things that weren't studied and the schools certainly didn't understand. They may notice behavioral changes, emotional changes, hearing loss related to treatment or where the tumor is, vision loss, balance. So there's a multitude of physical, cognitive and emotional behavioral changes that happen after treatment, as a result of treatment, and ones that don't show up for years.

Bri (06:10)
Yeah, and that's the case with anyone in the brain tumor community, but in particular with pediatric patients. In the ideal world and for many pediatric patients, they do go on and live into adulthood. So sometimes things don't show up until 20, 30 years later. Not to mention that a lot is changing for pediatric patients, setting the brain tumor aside just in their body in and of itself, whether they're going from toddler to adolescent, from adolescent to young adult. I mean, we all know what we're already going through in that time of our life without a brain tumor. And then you add a brain tumor to that and it makes it even more complex.

Stacia Wagner (06:53)
Bri, that's such a good point. I think one thing that we really focus on are those transition years. So when a child is moving out of elementary school into middle school, their whole perspective of what a brain tumor and its treatment and the impact has changes. Or a teenager who's diagnosed with a brain tumor, who's just starting to establish who they are, their self-esteem, and what identifies them as unique.

And maybe those things completely change after a brain tumor. You may have been an athlete and now walking a straight line is impossible. You may have been top of your class and now six hours of homework and you're struggling to get Cs. So it is, you're right, that it's a very unique time and we really work with families around those transition times.

Bri (07:47)
I'd love to learn a little more about this work with families. There's a ripple effect for everyone, but that ripple effect is quite different when the patient is under the age of 18. They have guardians, they may have siblings, they're in school with peers who may or may not be at a developmental age to understand why is Jimmy missing school for so long or etc. etc. etc. So what are some of these family resources look like that you all offer?

Stacia Wagner (08:18)
You're right. The impact is on the whole family and it does last forever. However, the impact on family is not well studied. There's some research on the impact on mothers who often face a higher PTSD rate or additional depression and anxiety.

But as far as fathers and siblings, there still remains little research on the impact, even at the time of diagnosis, but certainly years later. So our programs are developed to address the needs of the entire family. So we have specific programs for siblings, including bereaved siblings. Specific programs for fathers. And that was started because a group of fathers came to us and said, 10 years later, I don't know how to talk to my son about their fears. Certainly not about my own, and the fact that on Friday nights he's hanging out with us and doesn't have friends that are asking him to do things. And they're reflecting back on when they were teenagers and what their weekends look like, and they don't know how to talk to their children about that. Not that fathers don't struggle with that sometimes anyway, but in this situation even the siblings say, we know our dads treat us differently and are able to have some of the conversations that they have with us that they can't have with our sibling.

Bri (09:42)
Hmm. And I know you all built the only father and survivor retreat in the US. And you also offer teen and young adult retreats as well. What are these retreats all about?

Stacia Wagner (09:56)
That same group of dads said to us, what can we do? How can we find other dads that we can talk to? So they helped us develop a weekend retreat where the dads come with their children and it's children of all ages. So we have everything from six to 35. We have discussions for the dads. We have separate discussions for the survivors.

And then we bring them together and kind of say, how can everyone get on the same page? Where is their communication breakdown? And then we really focus on the strengths that they each bring to it. So we do a talent show and the fathers and survivors combine their talents, even if it's not the talent that people may expect. They have a lot of fun working together to do something.

We have competitions that might be rock wall climbing where the dads have to be blindfolded. A volleyball game where the net is covered and talk about competitive dads and the survivors feel extra good when they're able to beat their dads at something.

Bri (11:03)
I bet.

Stacia Wagner (11:03)
And it's really an opportunity, Bri, for dads to have alone time with their kids and see them in a light that they don't always see them. They get to see them as leaders. They get to see them jump into conversations and they get to see them hanging around with other kids their age and fitting in, which just really boosts everyone's self-esteem.

And I think one of my favorite lines is a dad who's come to the retreat several times. He says throughout the year, he'll look at his son and he'll say, it's time for Just Us, which is the name of our retreat. And it's just a reminder that he needs to create that alone time and how good it feels when they do have time just to celebrate each other.

Bri (11:50)
I can imagine how impactful that is for everyone within the whole family, even those who aren't at the retreat. Of course those who are in attendance at the retreat get benefits from it. They feel they can be themselves. They don't feel like outsiders. They feel included. They're part of something. They have friends.

You know, the fathers I'm sure experience some level of pride and excitement for their child to have that experience as well. But then that goes home with them too. And I'm sure then, you know, there's a new excitement or energy in the home that then goes to the rest of the family. I don't know, the only word that keeps coming to mind is just energy comes from those retreats beyond just being there.

Stacia Wagner (12:35)
That's such a great way of putting it, energy. And I think I see more hand holding, hugging, the opportunity for dads to express themselves and really build a peer support community of other dads. And to keep that going, we do have online groups for dads, even dads who can't attend the conference. And that is run actually by a father of a survivor who is a licensed social worker and a survivor who is also a licensed social worker and a dad. So it really just allows them to know that they're not alone and have conversations that they can't always have with their partner or with their friends at work or at any other setting.

It really is amazing how much support that they bring to each other and the support that the kids then bring to each other as well.

Bri (13:33)
And one of the things that you shared with me, Stacia, was that almost half of the CBTF staff are pediatric brain tumor survivors themselves, which I'm sure brings an added level of passion and determination and commitment, I would imagine, to those working towards these results, towards the research, towards the advocacy, towards these programs that you describe. Was that an active decision that you all made that that was gonna be a commitment or it just kind of evolved that way on its own?

Stacia Wagner (14:07)
The opportunity to have the teen and young adult groups really allowed us to see such strength and so many talents in the community that we wanted to highlight that. And because brain tumor survivors face such a high unemployment rate, we also wanted to say we're not contributing to unemployment. We're making sure that we offer employment opportunities and match people's strengths to jobs. And it's really been great.

I think with our program development, we also always ask families, what do you think about this? Where do you think there are gaps in services? How can we address that gap? Do you know a family who would like to speak about the challenges?

So we really believe that they're the strongest voice. What you read in the journal is great for a foundation, but what you hear from a family really builds the family programs that we have.

Bri (15:08)
I mean, it brings it to life in essence. As you mentioned, I'd love to learn more about the young adult programming that you all offer.

Stacia Wagner (15:16)
So with the teens and young adults, we partnered with Can't Make a Dream about 18 years ago because they came to us and said, we have a young adult retreat and the brain tumor survivors show up, but they don't really fit in and their challenges are unique. Can we build something? So we brought a group of professionals and families together. Everywhere from St. Jude's, University of Michigan, University of Illinois, California, and said, what would this look like? What would be the most helpful? So we developed the Heads Up Conference, which is now a regional conference for six days, bringing teens and young adults. Everyone from age 13 to age 35 together. We work on building social skills, on career and leadership skills.

The young adults now serve as volunteers. So they get leadership training both before the conference and during the conference. They mentor the teenagers. They provide peer support. They lead group discussions. And really, Bri, everyone has an incredibly good time.

And from the moment that they set foot at whatever campground we are on, they describe it as, I no longer need to explain myself. If I forget your name, who cares? Because everyone around here probably has some memory loss and they really feel empowered and leave feeling increased self-esteem.

We really work on depression and anxiety, which are higher in the pediatric brain tumor community whether it's mindfulness, yoga, journaling. So we just offer many different opportunities to highlight your talents and to determine what works best for you.

But truthfully, we learn from them so much about resilience, friendship, peer support, what works and what doesn't work, and what's going on in the community. The challenges that they face because of bullying or lack of understanding about people who look, act, think differently.

Bri (17:33)
I'm starting to see the picture being painted of what this support looks like from the day of diagnosis throughout the brain tumor journey. It's not just, you know, diagnosis and treatment. It's not even just the medical side of things. It is managing this long term in their life and for a group of patients, survivors, and their families where, you know, even as an adult getting a diagnosis like this, it's upending. So I can't even imagine being a child and getting a diagnosis like this when you're already just starting to understand the world.

And at some point, these patients and survivors, as we kind of touched on a moment ago, transition into a career themselves. And I know you all have a leadership and independence program as well on that front. What would you like to share about that program?

Stacia Wagner (18:28)
What we have found through research is one of the biggest barriers to successful obtaining and maintaining employment for survivors is the social skill challenge. So whether it be inability to control emotions or fatigue, the physical challenges. How do you work around that?

So we really work to build social skills and to do strength-based interviewing. Even if it's just in building friendships, how do you tell somebody what your challenges are, but let them know your strengths as well?

Research has shown that many elementary school teachers and parents and peers, don't see the brain tumor survivors as leaders. So how can we change that perspective? So we do have a teen leadership program, which is online, but the teens create a contract that says, here are my independence and leadership goals for this year. And then they meet monthly, they support each other, but they talk on different leadership topics. How do you become a better communicator?

One thing that many survivors struggle with is just back and forth conversation or the ability to hear others' opinions. So how do we enhance that without making it feel punitive? How do we do this in a way that many people, young people need help with social skills, especially as computer time grows and there's less face-to-face interaction. So hopefully we're just giving them kind of a one-up on their peers by adding social skill training.

Bri (20:10)
That's amazing. You all have accomplished and continue to accomplish a great amount. I'm curious what you see on the horizon.

Stacia Wagner (20:19)
This year we are really focusing on enhancing the leadership and independence and independence meaning any form of independence. It may mean your parents helping you learn how to do your own laundry and helping parents understand that each independence level looks different for the survivors. But how do you encourage your survivor to be more independent? And we do a lot of that with our parent online groups too.

And then another big focus this year is those aging young adults, because unfortunately, Bri, there aren't very many support programs for aging pediatric brain tumor and spinal cord tumor survivors, especially after age 30 when you really consider yourself moving on to a different phase. And now your peers are not only getting married, having children, having careers, you're feeling further behind. Many survivors still live at home, haven't had a date, don't have a strong peer support community until they become part of CBTF. But how do we keep that growing and how do we continue to provide support and actual resources for the aging survivors as well?

Bri (21:38)
You've really hit the nail on the head in that there is pediatric support. There's even more out there for adult support. But that transition point between the two has kind of gotten lost in the midst of things. So I love to hear that you all are looking to fill that gap because it really, I mean, a gap is an understatement. It's like the Grand Canyon in the brain tumor community. So that's wonderful. And I can't wait to hear more about what's to come and keep an eye out for what you all do with that space and time so to speak.

Stacia Wagner (22:13)
Well, thanks, Bri. And I just, when you said that, it brought up one more thing that I think is so important about your right it does feel like a Grand Canyon sometimes. Much of the work that we do with the parents of young adult survivors who are now aging is what's gonna happen when I'm no longer here? How can I make sure that my child has the resources they need? Where do I begin?

And that is another goal of ours is to make sure that we're well-versed and can provide information on next steps, whether it's financial, living arrangements, any form of independence. And that's another area where the siblings come in because many siblings feel if something happens to my parents, my brother will be living with me. Am I prepared for that? What can I do emotionally and physically, financially?

Bri (23:06)
Absolutely. As you mentioned in the beginning, you know, this is really a lifetime impact here. You know, the diagnosis may have come at, you know, two, 10, 15. But to our point early on in the conversation, this is long term. This is lifelong. Even if there's never a recurrence, the late term impact of it is ongoing for sure.

If people want to get involved and learn more, whether that's making a donation, get involved in one of the programs that you're offering, volunteering, where can they find you?

Stacia Wagner (23:39)
Well, thank you for bringing attention to this and hopefully people will come to our website, learn more about us at cbtf.org and support us. We can't do the programs that we do without the support of people, companies and a real belief in the difference that every dollar makes.

Bri (24:02)
Well, Stacia, I'm curious how doing this work in the brain tumor community specifically in the pediatric population, how has this rewired your mind?

Stacia Wagner (24:14)
That's a good question. And I think one of the most eye-opening things that I have experienced is the fact that we still live in a superficial environment where appearance, first impressions really make a difference. And I've seen so many survivors struggle with changes in appearance, changes in the way they talk, other physical changes, and how can we really improve awareness and make people step back and listen before forming a judgment? And I know that sounds like a dream world, but it is of the utmost importance to all of us as we witness every day the strength of the families along with their challenges.

Bri (25:05)
Absolutely, especially the further out that we get as survivors, I can't tell you how many times someone has said to me, but you look so healthy. And to which I say, and I feel so healthy, but that doesn't make it go away. There's still things going on. And it does require a level of resilience and strength, as you mentioned, to continue to move forward with all of this and I definitely see that in our community for sure, without a doubt.

Stacia Wagner (25:36)
And I'm so glad that you highlighted that because I think oftentimes families talk to us about a stigma attached to brain tumors and that people interpret the fact that you had a brain tumor as a loss of IQ points or give the look like, oh my gosh, are you going to live? So there's not people always wearing gray ribbons or signs I'm a brain tumor survivor, where other cancers, you do see a lot more people supporting the fact that they are a survivor. So hopefully between all of us, we can help end that stigma too, Bri.

Bri (26:14)
Together we can for sure.

Thank you so much Stacia for taking the time and sharing about Children's Brain Tumor Foundation shining a light on the experience of pediatric brain tumor patients and their families and their families is such a critical part of this. I really want to encourage everyone to check out the website. I will include it in the show notes so you can find it very easily. And thank you for joining me Stacia.

Stacia Wagner (26:39)
Thank you, Bri, for all of your work and for highlighting the importance of awareness for brain tumors and the impact and just bringing a real voice to the community.

Bri (26:57)
Thank you for being part of the Rewired Minds community. Full show notes, resources, and a transcript for today's conversation can be found at rewired-minds.com. If you or someone you know has a brain tumor story to share, I'd love to hear from you. Visit rewired-minds.com to learn more about collaborating on a future episode. This podcast is a one woman labor of love. It's a true honor to bring it to your ears and facilitate connection among the brain tumor community. If this episode resonated with you, please rate, review, and share with someone who might need to hear it.

Bri (27:29)
The stories shared in this podcast are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation.