Ep 25 | May 20, 2026 | 23 mins

In this episode of Rewired Minds, Bri Salsman interviews Kelly Glover, a nurse navigator at the Brain Tumor Network (BTN). They discuss Kelly's personal journey as a cancer survivor and her passion for helping patients navigate the complexities of brain tumor diagnoses. The conversation covers the origin of BTN, its personalized navigation services, and the importance of community support. Kelly emphasizes the need for advocacy in improving access to care and clinical trials, and they explore the future aspirations of BTN in expanding its reach and resources for patients. The episode highlights the significance of empowering patients and fostering a sense of hope within the brain tumor community.

Bri will be participating in Coaching for Causes for another year. Each May, certified coaches from various fields donate our time for 1:1 coaching sessions. Clients make a donation to a selected cause in exchange for a session. This ensures that 100% of proceeds go directly to the nonprofit. I'm raising funds for Northwestern Medicine Malnati Brain Tumor Institute. The best part is that every coach chooses their own cause, so you can donate to another coach's cause and still coach with me or vice versa. Visit coachingforcauses.com for details.

Resources
Check out a list of the most common medical terms relating to the brain tumor experience: rewired-minds.com/terms
Connect with brain tumor organizations here: 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 Brain Tumor Network
Website: braintumornetwork.org
Phone: 844-286-6110
Facebook: https://www.facebook.com/braintumornetwork
Instagram: @braintumornetwork
LinkedIn: https://www.linkedin.com/company/braintumornetwork

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)
Before we get into today's episode, I'm very proud to share that I'll be participating in Coaching for Causes for another year. Coaching for Causes is built on two core principles, being of service and making a difference. Each May, certified coaches like me from various fields donate our time for virtual and in-person one-on-one coaching sessions. Clients like you make a donation to a selected cause in exchange for a session. This ensures that 100% of proceeds go directly to the nonprofit.

I'm raising funds for Northwestern Medicine Malnati Brain Tumor Institute, where I've received all my treatment and care. The best part is that every coach chooses their own cause, so you can donate to another coach's cause and still coach with me or vice versa. I encourage you to go back and listen to episode 14 to hear Caroline Lehner's story. She's the founder of Coaching for Causes.

Also, visit coachingforcauses.com for details and to find your coach, make a donation and book your session.

Bri (01:28)
Today, we're spotlighting the Brain Tumor Network with Kelly Glover, who is a nurse navigator at BTN. I'm so excited she's joining because she'll be able to share firsthand insights into the personalized navigation services that the BTN offers. Welcome, Kelly. Thanks so much for being here.

Kelly Glover (01:44)
Thank you so much for having me.

Bri (01:46)
I'd love to kind of set the stage a little bit with how you arrived at BTN and kind of your path towards this organization.

Kelly Glover (01:55)
So I've been at BTN for just under eight years now. I'm a cancer survivor myself and I've had loved ones suffer from cancer. So oncology has always held a special place for me. People who are dealing with primary brain tumors are very special. The brain is the essence of life. So when it is diseased, it affects every aspect of your life and your loved one's lives as well. I have immense empathy for the patients we have the honor to serve and they've always been very dear to me. So when I learned of this opportunity, it drew to my heart immediately and I just knew I had to take part in it.

Bri (02:27)
You know, I find that almost everyone that I meet who works at a brain tumor organization has some sort of personal connection to it. It's definitely work to have passion around for sure because otherwise you will burn out very quickly.

Kelly Glover (02:43)
Definitely, and especially dealing with these types of, you know, diagnoses, it's really important to have that connection because, I always say to people, patients aren't a chart, they're people, they're someone's mother, brother, sister, father, and if you don't truly have a passion for it, you're not going to see it in those eyes.

Bri (03:00)
I love that. And on the Brain Tumor Network front, how did this organization come about? What's the origin story there?

Kelly Glover (03:07)
So the history of BTN started back in 1994. Susan Sontag was diagnosed with an inoperable grade three astrocytoma. And at the time she was told she had three years to live. Through a lot of research and effort, Susan and her husband Rick Sontag moved forward with a clinical trial. The trial helped Susan gain many additional years with her loved ones until she passed in 2022.

It was within the diagnosis that they realized the need for advancement in the primary brain tumor space as well as assistance for patients. They dedicated themselves to make that difference and in 2002 they founded the Sontag Foundation which funds innovative primary brain cancer research and supports early career scientists with grants. In 2004 they founded a support group called the Northeast Florida Brain Tumor Support Group and that was specifically for patients and caregivers.

It was through that support group that they were able to identify specific needs they consistently heard from the patients and caregivers that weren't getting met. So they developed the Brain Tumor Network in 2014 to provide direct navigation assistance to the patients and their loved ones.

Bri (04:13)
What I hear in that is just kind of following the next step that is presented in front of you. And I know that I've got the Sontag Foundation listed on my resource page as well. So I'm glad that you brought that up. Just kind of doing one thing and as the next thing presents itself, seeing where you can help and support in that way. And it just evolves.

Kelly Glover (04:35)
Definitely, whenever there's a great need identified, Rick and Susan have always striven to make sure that they could do whatever they could to meet those needs. And, you know, it's admirable, without a doubt.

Bri (04:46)
Yeah, absolutely. I'm sure you've seen quite a bit over the eight years. What kinds of accomplishments have you been part of?

Kelly Glover (04:52)
So we've had lots of accomplishments through the years. I kind of feel as if the biggest accomplishments that we have are our interactions with the patients that we have every day. But we've also been able to make a really good presence in the brain tumor space to help those patients. We're out there, we have collaborations, we're doing advocacy, we're at a lot of the conferences, we're on panels. And that helps us support what we do for our patients every day. Every year we just continue to grow, but our mission remains the same, and that's to help the patients.

Bri (05:27)
Yeah, you all are extremely visible in the brain tumor community. I've come across you all at several events that I've been at. And so I knew when I decided to launch the podcast that you all absolutely were going to be top of the list in terms of a spotlight. So I'm so glad we are able to make it work out.

One of the things that I know makes you all so uniquely positioned compared to other organizations that I'm familiar with are your navigation services that I mentioned up top. I'd love to kind of dig into that a little bit more and share what that program is about and how that is different from other services.

Kelly Glover (06:03)
So what's interesting is when we first started, there weren't any other navigation programs out there like this. They just didn't exist at that time. So we kind of had to pave our way with it and we developed it over time. We have a multidisciplinary team of nurses and social workers. We have a health information management team as well. And we help patients. We meet them where they're at.

If they are at a situation where they're newly diagnosed or if they're progressed or if it's during stable disease, whatever their needs may be at the time, we assist them. And that could be with education on their diagnosis, education on their medical records, helping them with questions to ask their providers. We have a personalized clinical trial match system that we utilize to help find clinical trials for patients to bring back to their providers and discuss with them.

If they are eligible for it and they're interested in it, we'll initiate that initial contact with the trial for them and get their records there. Our social workers help with financial questions and resources and support groups, lodging, travel, our resources that we provide and the assistance that we give really kind of has no boundaries. I say that, but there are boundaries, obviously, but we have an extremely wide range of things that we try to help our patients and their loved ones with.

Bri (07:25)
Any diagnosis like this is overwhelming and you've got a lot of information coming at you and to have someone walk alongside you who knows how to navigate all of this to help you along the way is going to be helpful with any kind of diagnosis, major diagnosis.

But to add to that, that, you know, many brain tumor patients also might be experiencing symptoms that prevent them from being able to manage all of this on their own, whether that's cognition, whether it's physical, whether it's visually, you know, sitting at a laptop filling out applications and things like that. Even just using a search engine to find these resources can be quite taxing for patients in these situations.

The word that comes to mind is white glove. It's like a white glove experience, like a concierge, if you will.

Kelly Glover (08:12)
It is. We pride ourselves on everything we do is personalized for the patient. There's no cookie cutter navigation going on. We spend time with our patients and their loved ones like you said, there could be, you know, deficits that prevent them from being able to get these resources or communicating with us in certain ways. So whether email works best for them or phone or video, whatever works best for them, we do.

And we engage with them often because those needs change over time too. And we try to identify things that we can assist them with, even when they're unaware that they may need help with it or that it even exists. Because how do you know until someone tells you that there's help for something sometimes?

Once you're diagnosed with any of these diseases, you're thrown into this whole world that most people know nothing about prior. So how would you know to ask for help in certain areas if you don't know that they exist? So it's really important that we are very engaged and personalized with everyone that we talk to so that we can find ways to help them.

Bri (09:15)
Right, right. And I think it's also so important to point out for listeners too that this is all a free service that you all offer, correct?

Kelly Glover (09:22)
Yes, there's no charge for anything that we do at any time, ever.

Bri (09:26)
Which is amazing. Because of course, you know, just medical bills alone create a financial strain. And then if someone's out of work and other things on top of that, to have such an amazing personalized service free of charge, it's unheard of.

Kelly Glover (09:38)
It really is unheard of. And that's, you know, one of the million things that make us special that, you know, we are able to do this and there's no barrier for anyone to come to us. If they come to us, we will help them. And that's not the case with a lot of the services that are out there. We know that, you know, there's organizations, there's companies, there's insurance, there's all of these things and not everyone can gain access to all of it. But with Brain Turmer Network, anyone and everyone has access to us.

Bri (10:05)
And so how do people typically find you?

Kelly Glover (10:08)
So I'm glad you asked that question because we have a wonderful website that was just relaunched. So Brain Tumor Network, all one word, braintumornetwork.org is our website. And on there you can submit an online form for support. You can talk to someone via chat online during business hours and you can donate. There's educational information, patient stories, there's resources. There's so much wonderful information on there and a lot of our inquiries come in via the website.

One of the things that, you know, as we've grown, we've taken pride in that a lot of providers and institutions themselves refer patients to our services and they will give them our website and send them our way. So people still wind up coming through the website most often, but there are many word of mouth referrals that come in as well.

Bri (10:59)
And I'll definitely be sure to include your website in the show notes as well. That way listeners have easy access to it too. What do you see in the future for Brain Tumor Network? What kinds of programs or initiatives are you all dreaming about right now?

Kelly Glover (11:14)
So what's great is that it changes all the time, right? And it changes all the time because we continue to grow and expand. And we have collaborations, like right now we have a collaboration with the American Cancer Society. And through that, we're hoping to gain access for patients to get more resources and assistance through, you know, brain tumor network.

Anyone who calls into or goes online to the American Cancer Center, they're trained on knowing which patients are best to filter our way. And, you know, they'll send them to us for assistance. So we continue to grow through partnerships, collaborations, and just getting our name out there more and more to be able to help more patients. We continue with advocacy and like I said earlier, making sure that we have a presence at conferences and being part of the voice out there.

Bri (12:06)
What kind of advocate work have you all been involved with?

Kelly Glover (12:08)
Our leadership, I should say, more so than anyone, they've been involved with policies and they've been involved in a lot of the boards to have discussions about how do we get better access to care? How do we get care in a timely manner? What are the obstacles to getting patients into clinical trials? Because there are a lot of obstacles that patients face getting into clinical trials.

So we do travel across the country and make sure that we are part of the voice that's out there for whatever is available and going on at the time.

Bri (12:41)
You mentioned, you know, you travel across the country. And so I should point out too that your organization is based out of the United States. Do you all have resources for international patients as well?

Kelly Glover (12:51)
We primarily do everything within the United States. But if someone were to reach out looking for something outside of the United States, we would send them to the most appropriate resource in whatever country they were looking for for them as a starting point, but we don't navigate outside of the United States now.

Bri (13:10)
I think of you all as connectors as well. You all are so well connected in the brain tumor community, both in the U.S. but also around the globe that I know if I don't have an answer, if I don't know where to find it, someone at BTN knows and can point me in the right direction.

I think that's something that I've personally been very grateful for is your all’s willingness to do everything that you can to help no matter a person's circumstances, even if that resource is not necessarily BTN’s. You're very open to connecting to other organizations, collaborating with other organizations and just ultimately with the goal of getting patients the support and resources that they need.

Kelly Glover (13:54)
Definitely, as you said, you know, I mean, it takes a village. By no means could BrainTurmer Network itself be the end-all, be-all resource of everything, but we are a source of information to walk alongside everyone in their journey and help them get what it is that they need. And, you know, it's really important. It takes a village. It's really important to connect people to the different villages that help.

We pride ourselves on being non-biased and that allows us to give the resources to everyone that are best for them. And we go to great extents to vet out the resources that we do give out and make sure that they are good resources. And we look for that feedback on the resources to keep everything up to date. We do work very hard on that.

Bri (14:40)
And speaking of resources, I would love to dream a little bit with you, Kelly. If Brain Tumor Network had unlimited resources, whether that's financial, whether that's people resources, volunteers, any front, if for some reason you all came across unlimited resources, what would you do right away? What would be the first thing that you'd want to tackle?

Kelly Glover (15:04)
So obviously a cure, aside from that, I would say access to treatments and clinical trials for sure. And there was a way to figure out how to streamline utilizing AI to gain access quicker, that would be wonderful. Because I do think that AI has a role in healthcare, it's just still being worked out obviously. So if that could get worked out a little bit quicker, that would be great. Because one of the biggest obstacles still remains access to care, access to clinical trials. So if there was a way to vet out which patients match with what trials and which treatments quicker and get them there, that would be amazing.

Bri (15:352)
Gosh, bringing up access, that is such a big hurdle in so many ways for so many people. I mean, of course, we've already kind of touched on the financial aspect of things, but also proximity to a high quality care provider is a big part. And then, you know, when you add clinical trials into that as a layer, you know, if you've exhausted surgery, radiation, chemo, all other treatment options, and you're looking at clinical trials, then there's eligibility requirements, which creates more access challenges. For someone who may be listening, who feels like, gosh, I have tried everything that I possibly can, and I'm not getting anywhere. I'm feeling a bit hopeless. What might you say to them?

Kelly Glover (16:32)
I would encourage them to reach out to us. Let us see what we can do to help you. There are a lot of obstacles in the way, but there are ways to go down a different path if there's an obstacle on one side. Just because one clinical trial doesn't work out, it doesn't mean another one doesn't. It doesn't mean that perhaps going for compassionate use access isn't an option. It doesn't mean that there aren't providers that would be willing to do an off-label use of a medication under certain circumstances. Let's get second opinions. Let's get, let's keep the ball rolling and help them, you know, remain hopeful.

Bri (17:09)
And you mentioned compassionate use access. I'm sure some people may not know what that is. Could you explain that a little?

Kelly Glover (17:15)
So compassionate use is, it has to get cleared through the FDA and basically a provider has to be willing to supervise a treatment protocol and a pharmaceutical company or experimental company for whatever the treatment would be has to agree to grant access to whatever the treatment would be and then the FDA has to approve that.

A patient can gain access to a treatment that's not otherwise available. There are certain stipulations. They do want to see a, that basically all other treatments have been exhausted and they also want to see, you know, that there is a life expectancy under a certain amount. Some of the obstacles even within that are that it can be quite expensive because it is an out of pocket expense at that point, but it is a route that some patients are able to gain access to.

Bri (18:11)
This is such a perfect example for how working with someone like you, a nurse navigator at Brain Tumor Network, can help you, for lack of a better word, repeating myself, navigate this diagnosis and the path moving forward. You all have, not only access to resources, but knowledge and know-how and skills within a system that many patients never acquire on their own. And so it's just so wonderful to have an expert leading the way in that sense. So I appreciate you sharing that example.

Kelly Glover (18:45)
No, of course, and it goes back to what I had said earlier too. Just because you suddenly are diagnosed with a disease like this, how could you possibly know everything about the realm of the healthcare world under that diagnosis? That's what we're here for, and that's why we have those conversations with our patients, because we can help identify areas that they may not know even exist that could potentially help them.

Bri (19:10)
And I know you're not saying this, but I think it's important to, to double down and say that it's not to say patients can't also be their own advocates and shouldn't be their own advocates. Of course, they still play a role in this and they still, you know, educate themselves and learn along the way. What I think BTN helps do is one expedite that process because you can help narrow the focus and point patients in a direction that might take them three or four times as long to figure out on their own. But then again, that expertise, but the patient still plays an active role in this partnership.

Kelly Glover (19:45)
100%. We always say that we're here to empower our patients and walk alongside them. We're not walking for them and we're not taking over. We're here to just be another layer to their support system of information.

Bri (19:59)
Gosh, I love this. Kelly, how has working at the Brain Tumor Network rewired your mind?

Kelly Glover (20:03)
So for me, I've seen so many tremendous strides with treatments and trials in my time here. And I think the key word is community for me. There's a community of people who are bonded together and help one another that fall under these diagnoses. These diseases can be really isolating and they change everyone's lives really tremendously.

But the community of patients, their loved ones, and the providers all work together in a really strong way. Everyone has that common bond of doing what is best for the patients and working as hard as they can towards the goals. These diseases that can be so isolating, there's still such a sense of human connection and togetherness within the community. And the hope that I see and that I live daily is proof that all things are possible.

I feel we will get better treatments. We will find a cure. This community deserves nothing less. And I think that just through all of my years here, every year that passes, I feel more strongly towards that.

Bri (21:02)
I just got chills. Yes. Yes, yes, yes to everything. I love that so much. Kelly, thank you so much for sharing your time with us and sharing about the Brain Tumor Network. I know you mentioned the website earlier, and I will include that in the show notes. If there are other ways for listeners to get in touch or get involved, where else can they find you if there's anything else?

Kelly Glover (21:25)
We are on all social media platforms. And when I say all, I mean all, and they can call our office at any time as well. If you attend any of the large conferences for primary brain tumors, oncology, we're typically there. Come up and say hi.

Bri (21:41)
Wonderful. And I will include links to all your socials in the show notes as well. Thank you so much, Kelly, for being with us today.

Kelly Glover (21:48)
Perfect, thank you so much. I appreciate your time as well.

Bri (21:56)
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.

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.