A Path to Hope in the Brain Tumor Community

Have you struggled to find your path in your brain injury journey?

Courtney Watson is the Director of Programs & Development at Head for the Cure, a nonprofit that provides advice, stories, and resources, in collaboration with doctors, patients, and caregivers for every step of the brain tumor journey.

Courtney shares her personal connection to the cause following her mother's glioblastoma diagnosis in 2016 and discusses the organization's efforts in raising funds for local organizations, clinical trials, and research.

Head for the Cure offers many resources, e.g. support groups, treatment information, and the Rare Enough podcast. They also offer a new resource called
Join Your Path to Hope (JPH), which guides survivors and caregivers on their brain tumor journey through a quick questionnaire.

Courtney encourages all of us to find our path, join together, and get involved in the fight against brain cancer.

Guest Social Media info -
@headforthecure
@courtneywatson_7

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Transcript

0:07

Instrumental

bindwaves-host662_1_10-03-2024_134105: 0:10

Hi, I'm Kerri, a stroke survivor and a member of BIND, and today we're welcoming Courtney Watson, who's the Director of Programs and

0:17

Developments for Head for the

bindwaves-host662_1_10-03-2024_134105: 0:18

Cure. So,

0:20

Welcome to BINDWAVES, the official podcast of the Brain Injury Network of Dallas. I'm Brian White, BIND's Executive Director. On each episode, we'll be providing insight into the brain injury community. We'll be talking to members and professionals regarding their stories and the important role of BIND's Clubhouse. We work as a team to inspire hope, community, and a sense of purpose to survivors, caregivers, and the public. Thank you for tuning into BINDWAVES. BINDWAVES Let's get on with the show.

courtney-watson_1_10-03-2024_114105: 0:51

Hello, how are you? Yeah.

bindwaves-host662_1_10-03-2024_134105: 0:54

You're doing well. Um, so I guess just to get us started for all of our listeners, so they have a better understanding, can you tell us What is Head for the Cure? I mean, I mean, not like a basic, you know, general.

courtney-watson_1_10-03-2024_114105: 1:08

Yeah, yeah, Heads of the Cure is a nonprofit organization. We're based in Kansas City, Missouri, where we host primarily our 5k roadwalks across the country. So we luckily have over 25 events, uh, ranging from Seattle to Orlando. So really across the country where we get to really celebrate and honor the brain tumor community, um, and we get to share our resources, our different platforms throughout the organization, um, and really just bring everyone together. Our community is incredible, and it's really an honor to be able to be a part of it.

bindwaves-host662_1_10-03-2024_134105: 1:46

Okay, and it is more than just a 5k run

courtney-watson_1_10-03-2024_114105: 1:49

Absolutely. Yes. Yeah. I actually always say that whenever I'm talking to anyone about our events. Um, I think the 5k part is kind of the last part of it. Um, you know, our events are truly different, I think, than other organizations out there. Um, we really, really strive to enhance The community bring everyone in, um, we have various vendors from the local community, um, that come out and are a part. We have, um, you know, different aspects in terms of programs for the events. So we get to honor different caregivers, um, and healthcare heroes in that community, um, and also recognize the incredible warriors, um, that are going through a current diagnosis, um, and really just celebrate everyone as, as they're going through this fight. Um, we know that, we just want everyone to know that they're not alone through this. Um, as you know, having a brain tumor can be extremely isolating. Um, however, you know, Hybrid Care has various resources like support groups, um, we have our events, um, and really just online communities as well to bring everyone together.

bindwaves-host662_1_10-03-2024_134105: 3:00

That's great. Um, I know I've done the Head for the Cure. We've had a booth the last several years at the Head for the Cure here in Plano in Dallas, and like I said, we just got to go to Houston this last weekend. So that was fun. It was nice to see a different venue since I've always only done the Dallas one.

courtney-watson_1_10-03-2024_114105: 3:14

Yeah, yeah,

bindwaves-host662_1_10-03-2024_134105: 3:15

very fun.

courtney-watson_1_10-03-2024_114105: 3:16

having different, um, you know, community members just like, uh, BIND come out to our events. Our North Texas one's really special because we have, um, you know, a few organizations that we, we have, um, that are part of the brain tumor community and, and everyone's so close knit. So it's really great bringing everyone together.

bindwaves-host662_1_10-03-2024_134105: 3:35

And I know a lot of people don't think of brain tumor necessarily as part of the brain injury community, but we consider Head for the Cure part of our brain injury community as well. We have several members that have had brain tumors of some sort or another that have joined. We have a group here called Gray Matters that is a local support group. So, you

courtney-watson_1_10-03-2024_114105: 3:55

Yeah, yeah, we love Grey Matters. Um, uh, I think a great part of our organization is that, um, With our 5Ks, uh, we don't just have the 5K and then, you know, take the money, we, what we do is we really try to, again, partner with local support, um, and so we are able to partner with different, uh, organizations or academic centers, different hospitals in all of our cities that we're in, um, and a portion of the funds will go back to whatever they're working on, whether that's clinical trials, research, um, um, You know, the science stuff or, um, you know, like Gray Matters is actually one of our beneficiary partners, um, and we're able to support them as, you know, they have various fees, uh, throughout the year or through their picnic, luncheons, things like that. So, um, you know, it's really an honor to partner with organizations like, like you guys and Gray Matters.

bindwaves-host662_1_10-03-2024_134105: 4:50

that's great. Um, so when did Head for the Cure actually get started? How long has it been around?

courtney-watson_1_10-03-2024_114105: 4:56

It's been around since 2003. Um, our founder, Matt Anthony, he lost his brother to a glioblastoma that year. Um, they're a very active family and so running, cycling was a big part of everything. Um, and they really just wanted to honor, um, Chris is, is his name. And they did a small 5K in Kansas City where they're from. And it was, you know, 300 people. It was, it was a great kind of turnout. Fast forward to 22 years later, 21 years later, we just hosted our Kansas City event in August and we have raised over$710,000 with over 6,000 participants. So it's incredibly grown over the years and obviously expanded into different cities and that's how we have one in North Texas.

bindwaves-host662_1_10-03-2024_134105: 5:48

Right. Well, how many different cities do y'all have runs

courtney-watson_1_10-03-2024_114105: 5:50

Uh, right now we have about 25.

bindwaves-host662_1_10-03-2024_134105: 5:54

Okay. That's pretty good. So, how did you get involved with Head for the Cure?

courtney-watson_1_10-03-2024_114105: 6:01

So I actually found out about Head for the Care, uh, when my mom was diagnosed with the glioblastoma in 2016. Uh, we went to a, uh, appointment that she had with her neuro oncologist in the area. This is when I lived in Kansas City, and, uh, he had a poster about a 5k event, and he said, you know, this is a great organization, um, the events are kind of one of a kind, uh, it would be, you know, probably a good thing for you guys to attend. And so, uh, 2016, we, we have our first team for the event, uh, we brought family, friends, my mom was able to be there, um, and we enjoyed the morning, uh, it was, it was really great to see people that, you know, We're in the same club. Um, I kind of always say we're in this club that we don't want to be in, but we're making the most of it. Um, and we were able to, you know, connect with people and different aspects of, of kind of what we're going through as people experience, uh, along the journey. And, uh, we've had a team ever since then. Um, I luckily was able to join. our event's team for Head for the Cure in 2018 and really kind of move into this, this nonprofit world. Uh, I'd always kind of, I think I wanted to work for a charity organization in the realm of cancer. Uh, uh, growing up, um, you know, I, I had loved ones past that I was close with and, Having my mom pass of brain cancer was extremely hard and it just kind of gave me a purpose to look forward into.

bindwaves-host662_1_10-03-2024_134105: 7:34

I can, I can relate to that. So, um, curious, because, like, I'm the opposite, um, after my stroke, I had to move in with my parents, who became my caregiver, and that was a difficult relationship. It changed a lot. You know, we had to work out some things, so I'm curious how that worked for you, like, what the relationship was, how, if that changed from mother daughter, when you became a

courtney-watson_1_10-03-2024_114105: 7:55

It did. Um, I was in my early twenties when that happened. Uh, I lived in Kansas City, but with friends and the day that she was actually taken to the ICU and everything kind of happened. Um, that night I basically just moved in back with my parents. Um, I was You know, I think it's that incline that every person goes through. They're like, you just do it. Uh, you just take care of someone, you know, when they're going through something like this. And that was kind of my instinct. And so I lived with, back with my parents for, um, gosh, it was probably a year and a half. Um, heard, you know, She was diagnosed, and she passed about nine months later, so her, um, journey was pretty short, um, just because of how bad it was when they found it. Um, her cognitive abilities were very, very low. She needed a lot of assistance in terms of, you know, getting around the house, getting up the stairs, showering, all of that. Um, it kind of was that role, it kind of reversed a little bit. I was Kind of the caretaker along with my stepdad, my brother, um, and she kind of had that, you know, child aspect, um, because our cognition was so low, uh, of where the tumor was. So, um, I kind of say I doubled my age overnight. Um, you know, you kind of expect to do something like that in like your 40s, 50s as your parents age, but not as a 22, 23 year old. And, you know, I definitely changed. Um, you know, I think I matured a lot. You, you realize that you can't swap the small things in life, um, and something like that is, is incredibly hard to go through and being around that with your other, your family members as well. You know, you lean on each other for support. Um, we got, got a lot closer with my brother and my stepdad, uh, throughout the whole thing. And, um, you really just connect with everyone even more because, because you have to rely on each other.

bindwaves-host662_1_10-03-2024_134105: 9:52

right? I completely understand that, um, and that's where places, again, like Gray Matters comes in, they provide that support for the caregivers, because, you know, Caregivers need a lot of support. We say in our, in our little clubhouse, you know, that brain injury, when it happens, and it's the same, I'm gonna guess, with cancer, any of that kind of, it's the same. When something traumatic like that happens, it takes a village. It's not just happening to the person that is diagnosed. It happens, the whole family is affected, and that's That's what I think a lot of people in just the general community don't really get or understand about how this works and that it's really is an entire family event.

courtney-watson_1_10-03-2024_114105: 10:34

I mean, we, we're kind of within the foundation and we talk about how important caregivers are, um, and that, you know, they say usually it's, you know, so many people are impacted by brain cancer a year, but it's actually probably triple that, uh, if not triple, just because of, like you said, the amount of family members, friends that it requires to help. Um, you know, there was, you know, Myself, my brother, my stepdad, my mom, you know, her friends and family helped out. So, um, just because, you know, with a brain injury or a brain tumor, depending on where it is, each kind of millimeter or centimeter matters, it's not like other tumors where you can, you know, maybe take out breast tissue or, you know, take out part of your liver. You can't. You can remove brain matter, but it's going to impact the person, you know, pretty bad. So she wasn't able to drive. Um, we really kind of had to like, take away her phone. She, you know, cognitively didn't really use it. Or if she would, she would get on Facebook and repost random things. Um, so again, kind of like toddler like mentality. Um, so yeah, it really does take a village and, you know, that's why we're here with Head for the Cure is really trying to, um, have resources. For caregivers and patients going through this, um, there's a lot of information out there, um, as I'm sure with brain injuries as well, and so it can get very overwhelming really quick. Um, stay away from Google, um, and so it's, it's just really one of those things that there isn't a lot of education out there either, just because it's such a rare type of cancer, um, and a rare type of tumors. Um, and so. Whatever is out there that we present to our community as an organization, we want to make sure that, you know, it's able to help people, um, and it's vetted by the doctors that we partner with.

bindwaves-host662_1_10-03-2024_134105: 12:31

So, as you've been, you know, you're immersed in the world now that we work with Head

12:35

for the Cure, not just

bindwaves-host662_1_10-03-2024_134105: 12:36

your mother, but, so what would you say is the most impactful fact that you've learned about brain cancer that you would like our listeners to know?

courtney-watson_1_10-03-2024_114105: 12:45

Yeah, good question. Um, definitely, I think that, you know, there's really only like five FDA approved treatments and device for brain cancer or brain tumors. Um, whereas cancers like breast cancer or lung cancer, there's way more treatment options. Uh, there's a very, very limited. Um, amount of approved ones that people can go to and doctors can prescribe just because the pure fact that this disease is so underfunded, meaning it's so under researched, and then it kind of just trickles down from there. So, um, you know, whereas there's new treatments for other cancers, you know, every year, every five years, um, you know, one just got FDA approved about a month ago. The time before that was probably like 10, 15 years ago, which is insane. Um, so what we, you know, try to do as an organization is the funds that come in. Uh, we are able to say, you know, 88 cents per dollar donated goes directly to clinical trials, research, and patient and caregiver support. Uh, we want to make sure that the money is put where we need it. And, um, you know, hopefully one day we have a cure for this, but, um, I would love to be out of a job one day. Um, but you know, we, we know that that may not happen anytime soon. So really just being able to work with other organizations as well, um, and, and help fund the things that are promising and have more than five treatment options.

bindwaves-host662_1_10-03-2024_134105: 14:19

Right. What are maybe some of the misconceptions about brain cancer?

courtney-watson_1_10-03-2024_114105: 14:24

That's a great question. So we kind of talked about a little bit earlier, but with brain cancer and brain tumors, there's over 120 different types. So realistically what that means is that There's different cell types for a lot of them, and so treatments don't always work for them. And so that's kind of why there's only so many treatment options. Um, and you know, it's, it's not like other cancers. It can be very aggressive. You know, my mom, for example, she We kind of noticed her personality was changing a little bit, um, in January of 2016, February ish. And by the time they found everything in March, early March, the tumor had gone from, you know, her frontal lobe, kind of on the left hand side, all the way down and kind of back. So it grows so fast for a glioblastoma, um, and is super aggressive and, you know, unfortunately, grows really, really fast. Um And so a lot of people, once they get to that point, there's not a lot of options to go to right after that. There's surgery, uh, chemo, pill, and radiation. Um, and for my mom, at least, we had to bump up some of it because it was growing so fast. So you may not get that with that with other cancers. Um, another misconception is, is, you know, The patient going through it, um, may not know what's going on. Um, and so the family has to have a lot of, uh, assistance and has to make a lot of decisions, whereas other cancer types. Usually the patient can do that for themselves and advocate for themselves. Um, you know, like I said, my mom, she kind of referred it back to in kind of a toddler mindset. And so, I mean, she's 50 years old. We didn't have, she didn't have a will. She didn't have anything like that. Um, and so as, you know, Her children, and with my, along with my stepdad, you know, we had to make some really tough decisions, um, that most people really ever wouldn't think of. Um, so there's, like you said, there's a lot more, I think, pressure and impact on the caregivers, um, with, with brain cancer and brain tumors than, you know, other cancers out there.

bindwaves-host662_1_10-03-2024_134105: 16:46

I'm going to take a quick little break and just remind our listeners to go ahead and click that like button. Click that share button. If you're on YouTube following us there, click the follow button. Just like I always say, click all the buttons and continue listening. So, um, And now I have to look at my notes again because that always throws me off and I can't remember where I was or what I wanted to say. Um, so, we keep, like, using the, I want to make sure I understand and that our listeners understand. So, we're saying brain cancer, but we're also saying brain tumor a lot. Can you have a brain tumor and not have brain cancer? Or do the two go hand in

courtney-watson_1_10-03-2024_114105: 17:25

Yeah, for your first question, yeah, you're correct. Um, so there are malignant and benign brain tumors. Um, there can be some people that have, you know, a slow growing brain tumor that is non cancerous and they can get it removed and completely have a normal life. Um, and it's just kind of a blip, you know, uh, in their, in their timeline. Um, you know, the, I think the main people hear about brain cancers, um, but we do have resources, um, and help for both, uh, avenues. You know, people that have brain tumors still may have effects from surgery that people with brain cancer. might have as well. So if, you know, they have surgery and maybe their physical gait is different or their cognition is a little different post surgery, we do have resources for that as well. Because a lot of the times people with brain cancer sometimes have those same effects.

bindwaves-host662_1_10-03-2024_134105: 18:20

Okay, um, now I, is there any other, like, that you want to make sure people know about? brain cancer or what, what the Head for the Cure can do for them.

courtney-watson_1_10-03-2024_114105: 18:38

Yeah, so we like I said, we really kind of So, um, you know, I think it's really important that we pride ourselves on our community and how much of a grassroots foundation we are. Um, you know, every single dollar that comes in, whether it's a$5 donation, a$100 donation, you know, we really do, um, use it to the best of our ability and make sure that, um, you know, things are going towards the proper resources and, you know, like I said, trials, clinical trials, all that good stuff. So, um. You know, we've been able to luckily raise over$20 million over the past 21 years. So, um, a lot of those funds are being put towards, um, you know, those important needs, like I, like I mentioned, but, um, you know, really, it's just, we really enjoy our community and how personable it is, um, and how kind of We make our events different compared to other organizations or other, uh, activations out there. Um, yes, it's a tough thing for people to go through, but we want to make sure that people are still able to enjoy their morning, enjoy their day, feel connected with people. Um, You know, I love our North Texas event just because there's so many hugs and smiles. Um, there's so many people, which is awesome. So it's, it's those mornings that I know people look forward to every single year. Um, you know, on staff, we're able to experience that a lot more, which is so impactful. Um, but we knew, do know that people, you know, are only able to participate once a year. And so we want to make that as memorable as possible.

bindwaves-host662_1_10-03-2024_134105: 20:09

Okay, so and when you have the Head for the Cure in Dallas, does the money that's raised from that walk stay in the Dallas area, or does a portion stay with the, the whole non profit? How does, I mean,

courtney-watson_1_10-03-2024_114105: 20:22

Yeah, yeah. So technically, a little bit of both. Um, so a portion of the funds will go, um, towards the work at UT Southwestern, um, and their research that they're doing with brain tumors and brain cancer. Um, some of it will also go to the Gray Matter Support Group, so whatever they need it, whether it's, um, for picnics, luncheons, uh, you know, website maintenance, whatever they need. Um, and then another portion of that, you know, after everything's all, all reconciled, uh, we'll go towards our national initiatives. So whether it's our programs, um, that we have called Brains for the Cure, um, things like that. So it's, it's split up differently across the board, but yes, uh, the majority of the portion stays locally.

bindwaves-host662_1_10-03-2024_134105: 21:04

Okay, that's great. And then, um, since you're joining us on our podcast, I understand that Head for the Cure has a podcast, too. Can you share a little bit about that so our listeners can try to find

courtney-watson_1_10-03-2024_114105: 21:15

We do! It is called The Rare Enough Podcast. Our incredible community and fundraising coordinator, DJ, is actually a five year GBM survivor. He is probably one of the most positive people I've ever met in my life. And he hosts our podcast. So, uh, we release episodes monthly, um, and just have guests that talk about really specific topics and have those conversations that you may not hear anywhere else. Um, you know, the brain cancer community, uh, is small, but we know people are impacted so differently across the board. Um, and so, you know, hearing these conversations with, uh, patients or caregivers or industry partners or doctors, uh, kind of about what, what's all going on in the world. Um, you know, it's really great. And we're able to, to share that with our community each month. So, um, yeah, it's called the Rare Enough Podcast. It's on Apple, Spotify, wherever you listen to your podcasts. Um, and, uh, our next episode is released in a couple of weeks. So on Wednesdays and each month,

bindwaves-host662_1_10-03-2024_134105: 22:19

Awesome. And then, do you know, I mean, what are their future plans for Head for the Cure? Like, where, where are y'all going?

courtney-watson_1_10-03-2024_114105: 22:26

a lot of questions. If you ask our founder, it's, uh, way more events. And so we'll, we'll definitely, you know, always expand our high runs every year. Uh, we have a couple of new cities for next year that we're excited to, to bring our events to. Um, we've been growing our resources a lot this year between, um, our podcast, our Brains for the Cure online resource. And, uh, we just launched a kind of content curator on that website, um, so instead of going to, you know, Dr. Google out there and searching brain cancer, um, what you can do and what patients and caregivers can do is, is go to brainsforthecure. org, um, and then our new platform is called Join Your Path to Hope. It's in honor of, um, A mother that was lost, uh, to, to brain cancer and her initials are JPH. And so, Join Your Path to Hope has the same kind of initials. Um, but really what the kind of story of that is that as they were going through treatment, uh, her husband, you know, tried anything and everything he could between going to different hospitals or different groups and just trying to find different aspects. But, you know, You know, it was hard to keep track of things. Resources were just, you know, going everywhere, left and right, and so what we did was, um, created a quick kind of questionnaire where people can fill out and then they will get resources for medical needs, emotional needs, and relational needs, uh, based on their journey and kind of where they're at. So the great thing is, is they can retake it as their situation may change, whether a patient gets a recurrence, um, whether they want to explore clinical trials. Um, to, you know, if there's You know, just that diagnosis. How do you tell your children? Um, so there's a lot of different topics on there. And so it just organizes everything in one nice little place. Um, and so that again is on brainsforthecure. org. Um, you know, we, we launched that back in May and it's been incredible to see how many people we've been able to help out. Um, I kind of said, you know, I referenced that, like, I wish I had something like that when I was going through it with my mom. Um, so we just. Hope that, you know, people can use it, um, and, and use it at the time that they need.

bindwaves-host662_1_10-03-2024_134105: 24:43

Okay, great. And we'll make sure we get all that information and put it in our show notes and our description so that people can easily find those websites. How and if someone wants to get involved and volunteer with Head for the Cure, how do they do that?

courtney-watson_1_10-03-2024_114105: 24:58

We have 25 events to volunteer at, um, so if you want to go to head4thecure. org slash volunteer, uh, sign up near the city near you. Um, we are currently, um, about to launch our new 2025, um, campaigns shortly. So all of our events, um, will get up soon. So If you guys want to help out, we desperately need help at our events. You know, we have a small team, so our volunteers are absolutely incredible. We appreciate them so, so much. So, if you're interested in supporting in that way, um, feel free to do so. We also have our ambassador program, um, so if you're involved in the brain tumor community and want to Be a part of Head for the Cure. There's that avenue as well.

bindwaves-host662_1_10-03-2024_134105: 25:43

Awesome. Great. Well, thank you so much, Courtney, for joining us today and sharing more about Head for the Cure and being a partner with us and all that we do. We really enjoy the Head for the Cure

courtney-watson_1_10-03-2024_114105: 25:53

Thank you so much. It was, it was great speaking with you. Um, you know, BIND has been such a great supporter of ours, you know, over the years in North Texas. So we're excited to kind of explore that partnership even more and, and spread the news.

bindwaves-host662_1_10-03-2024_134105: 26:08

right. Thank you. And before we go, before we sign off, I'd like to remind all of our listeners that you can contact us. at

26:15

bindwaves@thebind.Org. Follow

bindwaves-host662_1_10-03-2024_134105: 26:18

us on

26:18

Instagram at@bindwaves.

bindwaves-host662_1_10-03-2024_134105: 26:21

That's hard to say. And visit the

26:24

website, um, thebind.org/bindwaves.

bindwaves-host662_1_10-03-2024_134105: 26:28

And don't forget, like I said, to like, share, subscribe on your favorite platform, and also hit notify on YouTube when you're listening to BindWaves so that you'll get the pop ups on Thursdays when they come out. So, just continue listening. Until next time!

26:42

We hope you've enjoyed listening to BIND Waves and continue to support BIND and our non profit mission. We support brain injury survivors as they reconnect into the life, the community, and their workplace. And we couldn't do that without great listeners like you. We appreciate each and every one of you. Continue watching. Until next time. Until next time.