Hi, I'm Kezia. I'm a stroke survivor and a member of BIND
and hi, I'm Carrie, a stroke survivor, and also a member of BIND. And today we are welcome Shari Nederoff. Um, she is a board member, an active volunteer for head for the cure. She's also very passionate about connecting survivors and building networks. So Shari, we're happy to have you here today.
Thank you for having me.
I guess to get started. Just tell us a little bit about yourself and who you are.
Um,
She's a lot.
Uh, like where I live and all that.
Um, kids. Dogs. We always care about the dogs, you know? The important stuff. Okay. Before we get into the more important to that. Or
We'll give it a try? That's funny.
Okay. All right. Um, I live in McKinney. We've been in Texas for 20 years. Uh, I have two, married with two kids. Um, Elizabeth who's 26 and married. Uh, she just graduated on Saturday with her doctorate in occupational therapy and she actually did her capstone here. Um,
yes. Remember Elizabeth.
And then, uh, my youngest is 23 and she is in Oklahoma. Uh, At Stillwater at OSU, they're both married. I have amazing son-in-laws um, I play tennis for fun when I'm not doing head for the cure stuff. And we just adopted an 11 year old. Uh, retired guide dog. He's a black lab named Wade. So we were, we were, our family was involved in training guide dogs and diabetic alert dogs for about, uh, 12 years.
Oh, that's very cool.
Yeah.
Yeah, that is really cool. And then I see right now that you mentioned head for the cure. How did you become so involved? Um, with brain injury? You know, within this community, within the summer work
well in, uh, 2010, my bootcamp instructor and, uh, sweet friend, Stevie Patrick was diagnosed with a brain tumor. It was a grade two astrocytoma. Um, anaplastic, astrocytoma. And so, uh, because she was in fitness, I kind of wanted to see what we could bring in honor her and, and kind of do more. She asked us to pray. That's all she really wanted. And I'm like, I need to do more. I'll pray, but I need to do more.
So, um, I just Googled, you know, different five Ks for a brain cancer, and I came across head for the cure. I ended up calling them and saying, Hey, would you bring your event to north Texas in honor of my friend? And they took a chance on us. They had one employee at the time. And, um, now I think they're in 25 cities. Um, they've grown to that much. And so. Um, it's an amazing community.
I am passionate about, um, finding a cure, finding better treatment and, um, yeah, that's how I became involved.
Okay. Just a little bit more about head for the cure. So my understanding, they started in Missouri in Kansas, Kansas, Kansas city, Kansas. Yeah. Missouri. Yeah. they started there. So is head, like most people, it feels like I know I didn't. Just just know of the 5k for head for the Cure is. Head to head for the cure, do more than just the 5k runs around, or is that their purpose? Just to raise money in awareness through the race, right.
Our, our, our passion is to do raise awareness and, um, funds and ignite hope within the community. So we do it mainly through our five Ks, but they also have different, uh, fundraising events. Um, they've done golf tournaments and bike rides and, um, Uh, different cities host different fundraisers, but the primary reason. Primary way is our 5k.
Um, We also have, uh, they also have a, um, kind of their educational initiative called brains for the cure and they host support groups for caregivers and, um, Survivors through that. And they're also an educational, um, website to, um, connect you with doctors and physicians in different brain tumor centers around the country.
Okay. Well, great. Well, and I know we just had the north Texas head for the. So do you want to let us know how he did with that? Sure
we had an day. The weather was perfect. It was this past Saturday. We had, um, about 1500. Uh, participants and about a hundred volunteers and friends that came including you guys. We appreciate y'all being there. Uh, we had, um, 72 teams that were represented. Um, 55 survivors and 24 of those were new. So, um, which was really hard for me to, to, uh, kind of swallow this year. That means that 24 new people were diagnosed and had found us, thankfully, they found this right.
But, uh, it's a little bittersweet. Um, we had 84 caregivers and we raised about $150,000. So we, um, We exceeded our, our goal, which is really exciting. And our funds do go, they stay locally to UT Southwestern and also to gray matter support group. We we grant them, uh, a grant. We offer them a grant through a head for the cure.
Oh, that's cool. I did not know that.
Yes. Yep. All of that sounds so beautiful. And I think just, even from your, like who you are and what you do, even with like the training dogs and everything, all of that is so much. To do for others. And what have you learned? Like that's been so impactful in your life about like brain injury, stroke. I mean that's stroke, sorry. Brain injury, cancer. Like what has been something that effect that has just stuck to you and that you've loved being able to share with others.
Um, I think for me, my background is in hospice nursing. Right. I was a hospice nurse before I had kids. Um, so I've always had, um, one, a love for, um, The elderly is mostly, that was in, in, in hospice. And so, um, And kind of grew up, uh, serving others and teaching my kids that and everything. So I think so. And so I've seen a lot of different camps, different cancers and different people, uh, communities of cancer and breast cancer, all that kind of stuff.
They are all wonderful, but I can tell you that the brain cancers. Uh, community is amazing. And I think for me, um, The joy, even though they get this diagnosis and you're living with a brain injury, right. I have seen so much joy in people. Uh, that I've been around and really living life to the fullest, you know, not taking anything for granted. And I think that's something that's lost on a lot of people these days.
Uh, we're so self-focused, um, with everything that's going on and, um, always wanting to get the next step or do something better. And I said, you know, live in the day, you guys do that, you do that every day and you do it beautifully. And that to me has, uh, been so heartwarming. I love to see that. And I'm very impressed that. Uh, it's a, it's a, it's an inspiration for me. To see that.
Well, Kind of bring back brain injury and brain cancer. I think this might be a little confusion for some people. It was for me. Um, I know, I know gray matters cause we have had some members from their support. We've gone and spoken to them and they've. Some of their members have come here, but just because you have brain cancer doesn't necessarily mean you have a brain injury, correct?
I mean, now you might end up with a brain injury because of your brain cancer, but I didn't want to make sure our listeners to understand that brain cancer doesn't necessarily equal brain injury.
Correct. But you can having brain cancer and having surgery can give you some of the symptoms that. Uh, may look like a brain injury, right? So some of the modalities of therapy and all that can be the same as well. And they benefit from BIND. I mean, I've known many people that have had brain cancer and they've, they've come here. So, um, it's a benefit, you know, Because I think it kind of mimics a little bit of it. Right.
Yeah. Thank you so much for saying that. Honestly, I think that just you like being able to say how fulfilling you feel about sharing all of this. I don't know, just wanting to do more for us than anyone else. It's just so inspiring. Thank you. You're sweet. So thank you so much for that. Um, and I know that right now, you just had how, you know, people that have, have had brain cancer and come to BIND. But how did you hear about BIND? Where did we come to you? Or how did you come to us?
Yes. Um, I think through gray matters, actually. Yeah. Um, yes, I think through gray matters. And then I think Karen is the one who told me, I think she volunteered here. And then I started coming here and you guys thought. Uh, I think a couple of years ago, you all did so much volunteer work for a head for the cure. You pack these. Um, Packets that we all said that you guys said to all the, the neurosurgeons and neuro-oncologists.
Um, so I think we kind of got involved with, because you guys were in volunteering for us, but I think it was mainly through gray matters. And that connection there is how we got involved with you guys.
Yeah, that would make sense because Karen is a very active member for us. Yes. Yes. We know her through grey matters. As is our executive director. He also came to us through. Exactly. Yeah.
I think it's that we like somehow within this like brain injury community, they always connect one another to like how to find. You know how to help others, how they help us and like vice versa all the time. Yeah, so that's pretty cool. I
do love connecting people. Yeah. And it's a great community for
sure. Yeah. It did. And I know just being that for the head, for the cure, we made new connections as well with some of the different therapists, because I think that's another thing people don't think about. Like you said, some of the injuries are the same, but. Even if they're not the same, we all have the same therapist. Everyone has a PT and OT and speech. Very true. I'm remaining connections. And that's the thing it's such a small world.
Like if you know, one therapist, they're going to know that there, someone's going to know that they remember. Everybody knows everybody. And the brain cancer brain injury world seems to be getting. More like that as well, which is good, I wish it was smaller. Yeah. I agree. I agree.
Yeah. Very much, like you said, the silver lining, you know, Just like, okay. It's bittersweet. For sure. Sure. Yes. Oh, I do want to take a little pause to make sure, to remind everyone of all our listeners to make sure to follow us and like our pages. Um, we're all on social media streams, and you can make sure to check us out every Thursday on your favorite social platform.
Thanks Kezia. Uh, so as, as you're looking for head for the cure, so you've said. How long has had for the cure been here in north Texas.
So head for the cure has been here. We just celebrated our 13th. Uh, race. So it's been here for 13 years. Head for the cure has been in existence for it'll be 21 years. This year we celebrated our 20th year anniversary last year. Um, and it was brought to, um, it was started in Kansas city, from Matt, Anthony, who is our founder and CEO and his, uh, Brother Chris was actually diagnosed in Frisco.
No. Um, he was living in Frisco at the time with a GBM in 2000, uh, and he was an avid runner and they decided to, um, Kind of form this head for the cure of 5k thing. And their first race was in 2003. Thanks.
So, okay. And so what are kind of the future plans for head for the cure and also how can our listeners of. They're interested in getting involved with head for the cure. How can they do that?
So future plans, I think, um, we are doing some, uh, focus on pediatric, um, cancers. Uh, that's something that we haven't done in the past. And so that's a big push for them. Um, also, I think they are. Um, looking at, uh, increasing their, um, awareness and, um, There's a new program of brains for the cure that there I'm coming out with. That'll give some support and hope to families. And I can't, I can't really say a lot about that.
It's actually a. Um, It's a family that has lost a loved one, and they're kind of coming on board with us and, um, given kind of a platform for that. Um, but we're going to raise money. We're going to find a cure. I hope in our lifetime. Right? That's really what my goal is. My passion is at head for the cure is they raised over $25 million in their 20 years of existence for a brain cancer research, which is really great. Um, north Texas itself, um, Has raised over $2 million.
So I'm really, really proud of that number. Um, so I think we're, we're pressing on, you know, we're pressing on, we're not going to leave this community and we're going to hopefully find a cure. So, yeah.
And I think that's $2 million is a great number that. That is an amazing number 2 million. I definitely would be proud of it a lot. And you're really active, like, is this. What, what is currently your position and like head for the cure and like, what is your personal goal? I mean, you were super passionate about it. Like I can, like, I can see it like honestly flows to me right now. Yeah. Like I can feel it.
Sweet. Um, so my role, I am just the local volunteer. Um, Uh, I am a board member. Um, uh, so we do zoom calls quarterly and, uh, involved in the marketing strategic. Subcommittee of that. Um, but I'm just a volunteer. And so yes, I am so passionate about it.
Yeah.
I don't think anyone should say, I'm just this, like, You were an amazing volunteer. It's so much passion. You bring so much to this position, like to, to this community. Right. That's amazing.
Yeah, I do. I do. They are my favorite people. I I've got to say that caregivers, survivors, um, team captains, we work with those. So it's just, it's an honor. Really?
Yeah. And honestly, with your, with your work right now, and you're, you're passionate for it. Well, how, how can you tell others to be as passionate as you are to make this impact? In life. Like really, like, what are you going to tell to everyone that's listening to us? Like, this is what you gotta do to be like me.
Oh, I don't know. Just be like you, but I would say serve others, you know, think, think about others and, and do something that's out of character. You know, this is, this is an interesting community because so many people have some disabilities and a lot of people shy away from that. Right. But press into that, you know, ask them, Hey, what's going on? Or. Tell me about your story, right? Ask them about it because everyone wants to be known. And, um, everyone.
You know, is here to support everyone. So I think just pressing into the hard stuff sometimes is what we need to do.
Yeah, and I love, I love that. Seriously. I think it's, it's amazing. It was cause I was like, hold on. Normally people are like, oh, I'm like the CEO of this. And this is what you know, but no doing. I think that it was simple, like, like love and passion and like your honest care. I think that's amazing. Thank you.
Yeah, thank you. We need more people like you and all of our different groups. Now I have a question, it just kind of ran on camera into my head. You mentioned earlier that UT Southwest, some of the money goes back to UT Southwest. So I'm just curious how. That works. I mean, I know their students' school training school. So does that, what did I mean.
They actually, we, uh, it goes to their brain tumor. Um, it's the Peter O'Donnell brain center there. And so they actually had their own research. Okay. Uh, program there. And so it, our dollars go right to their research program. In fact, Dr. Mar. Um, her group and everyone there is kind of recipients of that. And she was saying on Saturday that there's a, um, there's a new drug that was just found that came out to help with uh GBMs and kind of keeping it at bay. A little bit.
So we have exciting research and that's at UT Southwestern and that's where the dollars go to the research center there.
Okay. Yeah, I figured it was something like that. Yes.
Yes. Yeah, that's, that's pretty cool to be like, hearing about that too. All the research. Is there like, uh, something that you would recommend that people visit in case this is like some information to be needed or want to be known.
Sure. Yeah. So our website for head for the cure is a head for the cure.org and then brains for the cure. Our kind of educational initiative is brains for the cure.org. Um, so you can kind of get some information. Uh, they're about our events and fundraising and all that kind of stuff. So.
Yeah, we'll make sure to be having that in a description. I was like, okay. Part of our, um, resources area. So that's But just before finishing. Cause I know like we're about to get kicked out. Um, what do you want to make sure that like it's for people, like, I know you spoke great things for the volunteers, for people that probably didn't, you know, have this as an issue, but for those that are being like, just diagnosed, like, what do you want them to be hearing from, from you?
Yeah. Wow. I would say keep the faith. You know, um, Don't always listen to, uh, what the statistics are. You know, don't Google it, don't get it. You come to one of these groups, you come to a race, you come to gray matters and you will see long-term survivors. So, um, you know, and live life and get, get the support. There's amazing support in north Texas area and get the support. And um, live each day.
Yeah, I think that's so true. Don't ever web D. Web MD or so? No. It's never a good sign. Never a good thing. And it's the same. We say for brain injury survivors, which I can totally get for Brain cancer survivors as well. Support groups are a great lifeline for everybody. In fact, Support groups in general for anybody are a great lifeline. I know we have caregiver support groups. They're all out there. They're all around and yes, they're definitely helpful.
Survivors need to share their stories that helps us grow and helps us. Keep the faith and keep positive. Cause sometimes it is hard to stay positive, but Shari, we thank you so much for everything you do for the brain cancer community, head for the cure for letting us be involved for being a little part of it. We're so thankful to have you here. And again, like Kezia has said, we will make sure that the head for the cure information is included in our description of this episode.
Great! Thank you for your time. Thanks so much. You guys appreciate it.
Thank you too. And I do just want to remind all of our listeners to contact us. If you can email us at bindwaves@thebind.Org follow us on Instagram, which is @bindwaves and visit our website, which is thebind.org/bindwaves
and don't forget to hit that, like button, the share button and subscribe button. And if you're on YouTube. Might as well hit the notify button to just whatever button you see that looks like it should be fun to click. Go ahead and click it. And again, continue listening to us on Thursdays. Thank you.
until next time.