Episode 188 – Unstoppable Rare Disease Advocate with Rob Long

Did you know that there are more than 10,000 rare diseases in the United States? So, what is a rare disease?

Meet Rob Long who survived a very rare aggressive form of brain cancer, called anaplastic astrocytoma. When diagnosed, Rob was well on his way to securing a professional football career. He had been an All American punter for Syracuse University until he had to undergo brain surgery in his senior year. He was given a slim chance of surviving for more than a few months. 13 years later Rob and I got to meet and you get to hear our conversation.

After a year of chemo and radiation therapy Rob recognized that he was not going to have a football career. However, as you will hear, football was an integral part of his healing.
Today Rob is the executive director of Uplifting Athletes, an organization that combines sports with various projects to raise funding on research concerning rare diseases. This conversation is for me one of the most fascinating and, yes, uplifting ones I have had the pleasure to host. I hope you find it worth your time.

About the Guest:

Rob Long, Executive Director of Uplifting Athletes

A suburban Philadelphia native, Rob is a former All-American punter at Syracuse and has lived the rare disease journey. In December of 2010, late in his senior season, Rob was diagnosed with anaplastic astrocytoma, a rare and aggressive form of brain cancer. His prognosis at the time was less than encouraging, and his surgery, recovery, and treatment took 16 months. Prior to his diagnosis, Rob was on a path to the NFL as a punter, but that opportunity was lost by the time he was healthy enough to train again. A graduate of Syracuse University, Rob pursued a Masters in New Media Management from the SI Newhouse School of Public Communications. He also received a BS from the Martin J. Whitman School of Management.

Rob played football all four years for the Orange and was voted team captain by his teammates his final two seasons. He became the second Executive Director of Uplifting Athletes at the end of 2018. Prior to taking over as the Executive Director, Rob served as Uplifting Athletes’ Director of Rare Disease Engagement for nearly two years. Rob has a steadfast commitment and connection to the rare disease community as a rare brain cancer survivor. As a former star college football student-athlete, his passion and drive to advance the mission of Uplifting Athletes is inspirational. Rob and his wife, Irie, reside in suburban Philadelphia with their dogs Winston and Rocket.

Ways to connect with Rob:

Twitter: https://twitter.com/roblong47
LinkedIn: https://www.linkedin.com/in/roblong47/
Instagram: https://www.instagram.com/roblong47/

Uplifting Athletes’ Important Links:
Website: https://upliftingathletes.org/
Twitter: https://twitter.com/UpliftingAth
LinkedIn: https://www.linkedin.com/company/3007008/
Facebook: https://www.facebook.com/upliftingathletes
Instagram: https://instagram.com/upliftingathletes
YouTube: https://www.youtube.com/upliftingathletes
Donation: https://upliftingathletes.org/donate

About the Host:
Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog.

Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children’s Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association’s 2012 Hero Dog Awards.

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Transcription Notes

**Michael Hingson ** 00:00
Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I’m Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that’s a c c e s s i  capital B e. Visit 
www.accessibe.com
 to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we’re happy to meet you and to have you here with us.

**Michael Hingson ** 01:21
Well, Hi, and welcome once again to unstoppable mindset. I am your host, Mike Hingson. We are recording this in the summer of 2023. And we were just comparing notes. Our guest Rob Long is just outside Philadelphia. And one of the folks that he works with Valerie is up in Connecticut where it’s over 90 today. And Rob and I probably are around the same temperature. It’s about 82 or 83 here, but last week, it was over 100. And in fact for most of July, it was over 100 out here in Victorville. So go figure. But we all cope. And we all get along and do what we need to do. So Rob is the executive director of uplifting athletes, and he’s going to tell us about that as we move forward. Rob, among other things, is a person who has had to deal with a rare disease. And again, I’m going to leave most of that for him to talk about, but he’s an inspiration. And I’m really honored to have him on unstoppable mindset. He is another one of the folks who got introduced to us by our nonprofit partner manager, Sheldon Lewis, who got interviewed quite a while ago on this on this podcast. Well Rob, so welcome to unstoppable mindset. We’re really glad you’re here.

**Rob Long ** 02:39
Thank you so much for having me, Mike. I’m thrilled and honored to have the opportunity to to join.

**Michael Hingson ** 02:46
Well, why don’t we start kind of where I love to usually start in this hearing about the early Rob, you know, growing up and some of that kind of stuff.

**Rob Long ** 02:55
Sounds good. So probably go back. Gosh, back about 15 years ago, I was graduating high school outside Philadelphia and was fortunate to have received a full scholarship to play football at Syracuse University. I was a punter and kicker and was thrilled at the opportunity to play division one sports and really just got up on campus and I fell in love with with the university and playing football I had so much fun and I met so many great teammates that I still keep in touch with today. As I ventured through my college career, I was fortunate to have a really good career at Syracuse and was a freshman all American my first year and started to really I think capture some some intention from NFL scouts. And so by the time my senior year was starting, I was a captain my junior year I was elected a captain by my teammates my senior year as well. And going into my senior year, I pretty much just was focused on putting the football and doing what I needed to do and I would end up playing in the NFL. And you know, my biggest concern was which of the 32 teams were going to draft me and went in senior year and pretty much from the jump. Things did not go quite as I had expected. By the time my senior year was wrapping up, I still was having a pretty good year by regular standards on the field, but I knew there was something that was not quite right and Thanksgiving morning of 2010 I woke up was extremely sick and just kept throwing up and couldn’t figure out what was happening. And you really just don’t know how to describe it other than, like, I couldn’t stop vomiting for two hours, two plus hours. Finally had stopped and made it down to the football facility, talk to the doctors, and I said, Hey, like, something’s wrong, I, you know, I don’t feel well. And they tried to give me some Pepto Bismol and pretzel sticks. And I threw those up as well. And so they kind of just didn’t know what to do. I kind of hung around the facility. And as time passed, I, you know, started to feel a little bit better as the day went on. And, you know, pretty much by the end of the day, I kind of was like, Alright, I don’t know what that was all about. And that was a Thursday. Two days later, I played my final college game against Boston College at home against Syracuse. And it was during that game, where I really started to feel the physical effects of what was happening to me, I, by the time I was punting, I had no idea when I dropped the ball out of my hand if it was going to hit my foot. And so really started to show on the field that something wasn’t going quite right. So went back to the doctor, the team trainers after the game. And they said, We’re going to make an appointment with team doctor. So I met with the team doctor, and he said, we’re just going to start to try and rule some things out, sent me for an MRI of my brain. And it was December 2 2010. And I remember kind of joking with my mom before going into the MRI filling out the paperwork was my first time ever filling out medical paperwork and all those kinds of things. And went in had the MRI and about five minutes into the MRI of my brain, the radiate, radiologist stopped the machine and she came out and choose white as a ghost. And she said, hey, everything’s fine. And she’s speaking very fast, he was very pale, and said, we just need to run some more tests. And so they ran some more tests had a longer MRI gave me contrast, I all these things that I would later come to find out, you know, things weren’t fine. And that’s not normal procedure for somebody that, you know, has a normal brain scan. And so I remember walking out of the MRI room, and, you know, she was kept talking to her telling me stories trying to comfort me, but the whole time, I had no idea what was wrong or what was happening. And so she sent me out and just said, you know, good luck with everything. And I got back to the football facility. And that evening, met with the team doctor to have the MRI read and walked into the training room and the entire training staff was there. All of the team doctors, a few of my coaches were there. And generally that meant that a player had a season ending injury. And so I walked in and made it kind of a joke at the time. I was like, Oh, this must not be good. And nobody thought that was funny. So kind of realized that I was probably in trouble at that point. And sat down and the team doctor said you have a large growth in your brain. And you can see a specialist first thing in the morning. And, yeah, so I had to, I called called home. I knew given my mom’s family’s history of cancer. You know, I didn’t have the heart to tell her. So I call my dad and he was on his way into his, his job. He was working second shift at the time. And he said, You know, I told him I had a growth in my brain and you’re gonna see a specialist and say, I can’t believe this. He said, I just left your mom at your aunt’s house. Your hand Chrissy my mom’s younger sister had been diagnosed with breast cancer earlier that day. So in the span of about eight hours, my mom found out that her youngest sister had breast cancer and that her only son had a brain tumor. So it was a it was a tough one for us at that time.

**Michael Hingson ** 09:26
Needless to say, yeah. So what did they finally diagnosed he was having.

**Rob Long ** 09:33
So after I got I saw the specialist the next day, I walked in and on my on the screen was my MRI and I had never seen a brain MRI before and there was a large white mass that took up a quarter of my brain. And then neurologists that basically said that’s not supposed to be there. So they flew me home to Philadelphia And that’s four days later, I met with a team of surgeons at Thomas Jefferson University Hospital in Philadelphia. I had spent my 22nd birthday getting prepped for brain surgery on December 13 of 2010. The next day I had brain surgery, and then six days later, I went back to the hospital to get the pathology report. They diagnosed me with a grade three anaplastic astrocytoma it is of the glioma family. So if you familiar with a glioblastoma, my type of tumor thigh my diagnosis, the five year survival rate was 15%. And the doctors told my parents at that point, probably had about 36 months to live.

**Michael Hingson ** 10:48
Wow. And obviously, that didn’t help the football career. And so that meant a lot of changes. But somewhere along the line, you obviously did something, right, because it’s now been more than 36 months. It has.

**Rob Long ** 11:08
Yeah, it’s, we’re over 12 and a half years now, believe it or not, I’ve been incredibly lucky. And so after I got my diagnosis, essentially went to went back to the doctors, and they gave him my options. And they said, there’s a chemotherapy that you can take, it is the first first chemotherapy of its kind that has been FDA approved to penetrate the blood brain barrier. And along with that, I did 36 rounds of whole brain radiation. So they pretty much provided my life limit of radiation in about six and a half weeks, or about six weeks, and did chemotherapy every single day for for 30 days during that or for six weeks during that radiation period. And then took a month off and did another 12 months of chemotherapy, which are 28 day cycles. So go in the worst part of all of this was really the mental challenge that it presented, especially going through the 12 months of chemotherapy, because it was 28 day cycles. So I would spend 23 days preparing for five days of chemotherapy, and then I’d spend the next three weeks trying to gain all the weight back that I lost, trying to eat whatever I could to gain weight, knowing that I would lose about 15 pounds, going through my week of of chemo and be sick and not be able to eat certain things. And so think it was, you know, the definition of insanity, doing the same thing and expecting different results. Right. And it was that was my life for over a year. And it really took a mental and emotional toll over time.

**Michael Hingson ** 13:17
Certainly that makes a lot of sense. I can kind of understand it. But at the same time, what were you thinking that got you through all of that? Or were were you just kind of maintaining at the time? Or did you have any other kinds of thoughts that that really helped drive you through it? Yeah,

**Rob Long ** 13:34
though, one thing that got me going every single day was that I refuse to let this diagnosis be the thing that was the end of my life. I didn’t want it to kill me. I didn’t want my parents to have to deal with that. I wanted to play football. I wanted to end my football career on my terms, not because I was diagnosed with this, this disease and that’s what I did every single day that I could I went to the gym, even days where I couldn’t lift because my my blood cells weren’t very Cooper ating fast enough, I would at least just go and show up and hang out and it was just a part of my routine every single day. You know, when I was going through chemo and radiation, I’d wake up I’d do my chemo first thing. I’d go to the hospital, I would do radiation. I’d come home from that. And pretty much go right to the gym and then take a nap eat dinner. And that was my life. And that was what I did. And it was the people that I saw every day. It was the the drive that I had that I wanted to. I wanted to get better. I wanted to play football in the NFL. That was my that was my dream and I wanted to do whatever it could take to make that happen.

**Michael Hingson ** 15:00
So football really, in every sense of the word kept you going. And the fact that you had developed such a team spirit and working with a team and so on, were the people around you at the gym and all that pretty supportive, how to how did they all react to all of this?

**Rob Long ** 15:15
They were unbelievable. I mean, I don’t know. And they’re just there. They’re incredible. And I think the most important thing for me was that they saw me every day, they knew why I was there. And they just treated me like, I was anybody else that came to the gym and was just trying to work out and to get better. It wasn’t about my cancer, we didn’t talk about it every day, probably rarely talked about it. But talked about everything else that was happening in the world. And I think that sense of, of normalcy was what I was after, because I had no control over anything at that point. And so I was just trying to seek some level of consistency. And that’s what I found. By working out by going to the field and putting footballs, that was the one thing that, you know, I knew I could put effort in and get reward out of and, you know, my health was, more or less not in my hands, or not as nearly as much in my hands as I would have wished it was. At the

**Michael Hingson ** 16:29
same time, though. While you didn’t have any real control over a lot of that, as we often talk about here on unstoppable mindset where you did have control over it was how you dealt with it. And you clearly did you develop the mindset and you stuck to it, and you developed an attitude. And you decided that you were gonna do everything you could to, to continue to grow and move forward, which had to be certainly a challenge. And a lot of things happen along the way that could try to topple that, but you did great.

**Rob Long ** 17:01
Yeah, I, I don’t know. Your where it all came from, I think there was a lot of lot of discipline and things that were instilled in me playing football at a high level, you know, that there’s things that you need to take care of, in order to hold up your end of the bargain for your teammates and the people around you. And, you know, when I’m no longer on a team, and I’m going through treatment, like I still am going to do whatever I can to, to hold up my end of the bargain. And that means, you know, being there for my family and doing the things that I need to do. So that that I can be as helpful as I can. And I think for me, the the biggest piece is just knowing and I’ve learned this by going through what I’ve gone through is that at the end of the day, like you have to be the one that wants it and you need to be the one that is going to do it. And there is nobody there to tell me to go pump footballs, there’s nobody there to tell me to go to the gym each day. In fact, there’s probably a few people telling me not to go to the gym each day. But it was something that it provided me something to do and something to look forward to. That was not revolving around my medical diagnosis.

**Michael Hingson ** 18:26
Yeah, there are just some things you do have to do for yourself. Nobody can do them for you, which is what you clearly discovered and realized. And so you you moved ahead, where your coaches supportive you weren’t back at Syracuse, needless to say, you were down in Philadelphia. So did you hear from them or your teammates? In even now today? Do you still hear from them at all?

**Rob Long ** 18:48
Yeah, they’re, they’re unbelievable. And I think it’s, you know, a huge part of of why I you know, and I know we haven’t talked about yet but of why the why we do the work that we do with uplifting athletes. It’s there’s an unbelievable power in in sports. And there’s a camaraderie that is built there is a it’s a it’s another family. It’s a non blood related family that you develop. And it’s an incredible, incredible feeling to have the support of so many people I remember after surgery after my diagnosis. It was the first time in my football career in four years at Syracuse, we’d made it to a bowl game and I think the first time in probably seven or eight years that Syracuse had been to a bowl game. And my senior year we got to a bowl game. And you know, my my senior class had been a big part of why we were in a bowl game that year and I had surgery 17 days before our bowl game, and my goal was to get to that bowl game regard Are those of us anything else and it was quite an adventure to get there. But I did get there. Despite a New York City Blizzard trying to prevent that from happening, I got to the ballgame. And I saw my teammates. And to this day, one of the best days of my life, I just saw every single one of them, they gave me a hug. They were joking around with me messing around with me. And again, it was, it wasn’t about me, or what I had been through, it was just about being back with my brothers, with my friends, and coaches and, and the staff that supported me and continued to to this day or are, you know, a huge reason of why I’m able to be where I am.

**Michael Hingson ** 20:43
And I could go back and research but at Syracuse when we did all right now we’re talking. Who did you play? Kansas State? Ah, there you go. Yep.

**Rob Long ** 20:55
Yeah, point an old Yankee Stadium or new Yankee Stadium, Yankee Yankee Stadium. So, yeah, it was an awesome experience. So

**Michael Hingson ** 21:03
do you think you’ve been there helps the team and contributed? Maybe, how but it did.

**Rob Long ** 21:11
It was. It was just I think they were all and, you know, understandably, so concerned about me. It all happened very quickly, right? Sure. We played your final game, I think November 28. And within five days, I had been told that I had, you know, a tumor. And within three weeks, I was told that I had a rare and aggressive form of cancer. So it all went very quickly. So I think for them to see me after hearing all this, because I was, you know, away from them. And I think for them to see me, even without my hair was still you know, good to know that for them that was you know, still operating and doing what I love to do. And

**Michael Hingson ** 22:00
you inspired I will bet anything that if you ask them, they would tell you, you inspired which is which is cool. So you went through a year of all of this, and then what did you do, because probably the Giants nor anyone else were going to hire you.

**Rob Long ** 22:17
So I went through chemo, I actually, I worked out on my pro day, I probably shouldn’t know. But I did. So I got to work out for a few of the NFL teams there. And, you know, over the next couple of years, I actually worked out for a handful of NFL teams. But once I kind of missed the draft, it becomes a very difficult league to break into there’s jobs in the world, and every single one of them was filled the year before. So it’s not only about being good enough, it’s also about the opportunity that is presented. And so after about two years of of really trying to to make it work, I went back to school at Syracuse, I got my master’s degree. And so I was trying to just keep things moving forward while still trying to fulfill this dream. And I went to a prospect camp in Arizona. And there was this sense of peace that I had, after going to that prospect camp that I had worked. For the last 24 months, I’d battled through 12 months of chemotherapy, I’d gone to the gym, I’d worked out, I’d done everything that I could do. And I pretty much went to that prospect camp and I said, I don’t really care how this goes, go, I think I’m done. I think I’m done trying to play football. And I realized that I had you know, I was fortunate to be in a place that I didn’t feel like I needed football to be successful. I felt like that I could go and do something else and and find a way to, to live my life that, you know, helped me be happy. And I didn’t need football to do that. And I think that was a big turning point in my life that you know, I just had to walk away from from it on my terms. And I was super proud of myself for being able to get to that point. And I think that’s something that you really allowed me to just close the book on that chapter of my life and be able to focus on the new hand of cards that I had been dealt.

**Michael Hingson ** 24:31
You know, what’s interesting, is that you clearly, were very committed to wanting to play football and it was what was driving you. But you were also able to take that leap and recognize, okay, things have changed. I know a lot of people don’t seem to be able to do that when something else comes along. Why do you think that you were able to to actually go in a different direction and be comfortable about it because football had been said part of your life.

**Rob Long ** 25:03
I think there was a lot that went into it, I think. I think I went through many, many mental health kind of struggles throughout the time since my diagnosis. And I think one of those, you know, there was this sense of anger that I had about my situation, that I felt that I kind of had been robbed of my dream. And I don’t think I was able to process that in the most healthy of ways. And so, I got to a point for a while where I didn’t really enjoy football, I didn’t, I wouldn’t watch it, I wouldn’t, you know, be happy about going into practice, I would still do it. But I wasn’t, I wasn’t having fun, like, I lost that. Let fun. That was kind of what made football so amazing in the first place. And I think being able to kind of take a step back and just say, hey, like, you’re, you’re in a position that most kids dream about, you have the opportunity to play you played at Syracuse, you have the opportunity to try out in the NFL like, this is this is awesome like this, you should be happy for what you’ve done and where you’ve gotten to. And I think there was there’s pieces of that where I was like, I want to be able to enjoy your my life and the things that come along with it. Knowing that I have absolutely no idea how much time I have left on this earth. You know, I just kind of felt like, I don’t need to be seeking some other kind of form of validation of trying to figure out, you know, really where you’re where my self worth was. And I wanted to be kind of in control of that, and to be able to move that forward. And I kind of realized that football was not going to be the path for me to be able to do that.

**Michael Hingson ** 27:10
Well, what was your major when you were going through undergraduate?

**Rob Long ** 27:16
So my undergrad was marketing and supply chain management. And then my master’s was in New Media Management from the Newhouse School of Communications. So essentially, you know, a management degree from a communications school.

**Michael Hingson ** 27:33
So a little different than undergraduate work, but still all about being in the management world, and you obviously made the leap and you, you then decided to do it. So how long ago did you get your Masters

**Rob Long ** 27:48
2015 I, so about eight years, I finished my master’s degree. And I got a job, I worked a couple jobs. And, you know, it was just doing sales at one point, and it just wasn’t really feeling incredibly fulfilling. You know, it was work, it was okay. But I still having your left football and kind of that part of my life. It still hadn’t, I didn’t quite landed on where I was supposed to be. I had been working with opposing athletes as a kind of in a volunteer capacity. In 2012, my teammates at Syracuse started the Syracuse chapter of uplifting athletes in my honor. And it was, it was incredible. They got this, this thing started at Syracuse that had already existed, but started the Syracuse chapter, after my diagnosis. And I remained very involved with that. And it was something that I would talk to the team about, you know, each year and we would go and fundraise in the community and bring awareness to the rare disease community. And, for me, these little like, these little opportunities to kind of get a taste of of what this organization did, I was so drawn to it. And it’s ultimately what led me to reach out to the founder of uplifting athletes in 2016. And I said, Hey, is there any chance that I could join this organization full time, and he was, you know, very receptive to having me on board. And so the timing worked out is such that, you know, our founder, had kind of built this organization for about seven years that he had really kind of built this grassroots movement to align sports with the rare disease community and I think it was just such a cool concept and I really loved that and I had experienced, you know, what benefits had been brought to me, you know, as an athlete. And so I think from that standpoint, it was something that I was like this this is it like this is this is something that I can I can do and I can be in Korea. really passionate about. So Scott brought me on up with the athletes in 2016. And he had started a for profit venture just about a year later. And so the timing worked out is such that I got to work it up with the athletes starting 2016. And then two years later in 2018, was promoted to the executive director role. And that is where it’s just been an amazing opportunity for me to take my lived experiences, you know, as an athlete, as someone who was diagnosed with a rare disease, and take this awesome concept of an organization and kind of helped build it to what I believe it can become.

**Michael Hingson ** 30:50
Well, you clearly found your niche, and you were open to looking, which is really probably at least half the battle anyway. But you, you did it, and you wanted to find something where you thought you could fit in, and it sounds like you have but tell us a little bit about what uplifting athletes is all about.

**Rob Long ** 31:10
So one thing athletes, our mission is to build ours to harness the power of sport to build a community that invests in the lives of people impacted by Rare diseases. So what does this all mean is that we have the ability to take the platform that sports provides, and bring more awareness, attention and funding to the rare disease community. It’s something that has been really incredible to be able to see the evolution of the organization, we kind of live at a cross section of, of sports and rare diseases. And so one of the things that was really fundamental to who we are at uplifting athletes when, when my colleague Brett and I took over leadership of the the organization was that you’ll really want to focus on research. And so we knew that we needed to kind of develop a program that we really owned as an organization, we could get some sponsors for and we could celebrate, you know, the people doing amazing work in our community. And so, in 2018, we launched this this kind of crazy program at the time called the Young Investigator draft. It was modeled after the NFL Draft, but instead of drafting the top athletes in the country, we were drafting and funding the top researchers in the rare disease community.

**Michael Hingson ** 32:35
So to deal with definitions, what are we classifying as a rare disease.

**Rob Long ** 32:42
So a rare disease, there’s over 10,000 Rare Diseases, rare disease in the United States is a condition that impacts less than 200,000 Americans in a given year. So of the 10,000 Rare Diseases, 95% of them do not have an FDA approved treatment. So we have over 30 million people in the United States living with a rare disease 27, over 27 million of them go to the doctors and do not have access to an FDA approved treatment. I realized pretty early on that I was one of the lucky few that had access to an FDA approved treatment. And that’s why I’m sitting here having this conversation with you. And so really what our hope is through the Young Investigator draft is to invest in to fund and support the next generation of researchers. So that we can start to establish the pipeline of research that is required to bring a therapy to market. And so that’s where the young investigator draft is born. We launched the program and 2018 and got to be honest, I didn’t really know what I was doing at the time, but we seem to have figured it out along the way. And we’ve been able to partner with 33 different patient advocacy organizations in the rare disease space, and to fund 44 researchers and over $820,000 in research grants in the last four and a half years.

**Michael Hingson ** 34:04
So how does sports get involved in all that?

**Rob Long ** 34:08
So we kind of use the the concept, the excitement of sports to build up the draft specifically. So it’s held at the eagle Stadium in Philadelphia. Everybody comes in, it’s a draft environment. We have athletes that are making the picks. So we have our college student athletes that we work with, from our colleges and chapters across the country. They come and they’re part of the event. And they get to call up the researchers who are going to be presented their research grants and so each researcher gets a jersey with their name on the back, just as if they were an athlete, but you importantly they get a research grant that allows them to move their research forward.

**Michael Hingson ** 34:55
What are the sizes of some of the grants

**Rob Long ** 34:59
so in Initially, we had our first year, we funded six researchers in $10,000. In grants. This past year, we funded 10, researchers and $20,000 $20,000 grants over $200,000 and research grants this year, and we’re going to be doing at least that again in 2024. And that’ll take us over a million dollars in research funded through our first six young investigator draft. So we’ve we’ve certainly made some headway. And we’re really excited to see the progress that has been made with these research trends that we’ve been able to fund, have you been

**Michael Hingson ** 35:35
able to reach out to people like any of the owners of sports teams, since there’s usually some money there and talk with them about helping to fund some of the stuff?

**Rob Long ** 35:47
Yeah, so it’s part of kind of where we’re at as an organization is trying to get more partners and supporters on board, we have a lot of the teams in the NFL specifically that we work with, we have a handful of Major League Baseball teams that we work with. And it’s kind of one of the ways that we’ve been able to kind of take the next step as an organization. So we’ve talked about the research grant program, and we had kind of had the ability to reflect last year on, we’ve built kind of the first step in what we want to do as an organization invest in the next generation of research. Simultaneously, we had built this unbelievable network of athletes and professional sport teams that we were connected with. And so really in an effort to to leverage those relationships, we launched a new program late last fall, or I guess I should say, revitalized a program late last fall caught up with the experiences. And really what this does is provides people impacted by a rare diagnosis, the opportunity to connect with an athlete or a team, kind of similar to you know, make a wish type of situation, but being able to bring the entire family, the care partners, parents, siblings, and then we always try to bring, you know more than one family to our uplifting experiences events. Because as I said, there’s a part of our mission is really to build that community. And so that’s how we’ve been really able to leverage these sports partnerships and relationships is, is getting them to open their doors and roll at the red carpet for these families that otherwise would not have the opportunity to go to a baseball game or to go attend spring training in Florida or Arizona or go see behind the scenes of the Steelers stadium or in Kansas City at Arrowhead Stadium. And so we’re providing these opportunities to not only get kind of a behind the scenes tour of, of these really unique venues, but also to go to the games, experience them and spend that time together. So

**Michael Hingson ** 37:55
it’s clearly not just dealing with the fundraising and dealing with the athletes, it’s also dealing with the people who have rare diseases and trying to help motivate them to have some of the same successes that you’ve had. It sounds like,

**Rob Long ** 38:11
correct, it’s, it’s really been about just providing opportunities for families to just feel included. And, you know, there’s so much that you don’t appreciate with what these families have to deal with, or that I didn’t appreciate for what these families didn’t have that have to deal with. It’s, it’s not just getting tickets and going to a game is, you know, what supplies do we need to bring with us? Where do we park? What entrance? Can we go through? How do we get to our seats, our seats together, as you know, their Ada, seating and all these other things that we as an organization, we take care of when we put together these events. Our goal is to make sure that the families that we work with have a truly positive experience. And I think, you know, big picture when we were talking about you know, how we build out this program and how it fits into what we do as an organization. It’s really that, you know, we started and have continued and maintained the Young Investigator draft the research funding and even began to expand that a bit. And so we were doing this investment in the future we had, we’re funding the next generation of researchers knowing that it’s going to take those researchers a decade, two decades, three decades for them to take what they’re doing today and for a treatment to be delivered. So what are we doing for the here and now what are we doing for the families that are going through this and this is what we want it up with experiences to be is an opportunity for us to engage with this community, the incredible incredible people that we have the honor to work with and to help facilitate these opportunities for you They’re, they’re unbelievably appreciative. And I think, you know, I think back to, you know, my time, when I was sick, you know, one of the best days of my life was being able to get back and just see my teammates and be around them. You know, and we weren’t doing anything we, you know, we weren’t even at practice, it was just like being there in the locker room with them together. And I think allowing these families the opportunity to go and do something that is so. So engaging and so fulfilling. You know, I think it really kind of fills them up, it provides them that hope. And shows them that there’s, there’s people out there that are working to to make their lives better. And I really believe that that’s what the athletes that we work with are doing, the researchers that we work with are doing. And I know the staff that we have here and uplifting athletes is incredibly dedicated. And you’re just driven by the mission that we have as an organization.

**Michael Hingson ** 40:56
What exactly is the health equity initiative.

**Rob Long ** 40:58
So for us, health equity has become something that we believe regardless, if you’re in the rare disease community, we still want you to have the opportunity to have access to researchers and individuals that look like you. I think we we’ve come to learn how important diversity is in every facet of our life and medical research and medical care is no different. There have been studies out there that people adhere to treatment protocols. Better when they see a a doctor that looks like them. Research done in a more diverse lab can is as law has less biases implicated in it than traditional research. And so for us as an organization, we really wanted to not just have one thing that we did that is about health equity, it’s really woven into the fabric of our organization. And so through the Young Investigator draft, you know, we ensure that we have one at least one researcher from an underrepresented background as defined by the NIH, included in every draft class, and that’s been implemented over the last three years. For our research or travel program, we provide and reserve a portion of those stipends. For researchers from underrepresented backgrounds, there’s so much that we’re trying to kind of build out, especially when we’re trying to engage with the next generation of researchers provide them the opportunities to pursue research in the rare disease community, through Young Investigator draft and just regardless of where you come from, or what you look like, we want you to feel welcomed and know that there’s opportunities in the rare disease community. And so a big piece of what we’re trying to do is meet researchers where they are doing speaking engagements all across the country. at colleges and universities that graduate, the highest percentage of researchers from underrepresented backgrounds are going to HBCUs and HSI guys that were able to connect and meet with these researchers where they are because ultimately, the rare disease community is, is as diverse as the general population. We have people from all walks of life, socio economic statuses, races, genders, and I think the community around them should should reflect that. And I think that’s just something about, you know, who we want to be and and I believe in leading by example. And so we try to put this stuff these policies in place and and follow them and, and know that over time, you know, the good will come out of it.

**Michael Hingson ** 43:52
Not that I have a question that comes up in my brain is, clearly you are an advocate and clearly uplifting athletes is advocating and a lot of different ways. Have you tried to do anything in the world of Washington to advocate and deal with legislation for more funding? Or is for creating more awareness for rare diseases and so on?

**Rob Long ** 44:18
Yeah, so there are some great organizations that currently exist in the rare disease space that do a lot of policy work in Washington. So for us, we’re trying to fill our, our niche, our kind of space in this, I believe, and part of my bigger vision for the organization of uplifting athletes is to get to a point where we can play a role both in policy at the state and national level. And so I kind of view your what we’re doing as an organization as kind of baby steps kind of one step at a time and building that solid foundation. And it first started with kind of getting our own house in order or infrastructure in order and then you establishing the draft. And then once we’ve established the draft, we built some relationships. Now we can establish and build out up with experiences. And once that’s been established, you know, what is next was the next opportunity for us. And I believe that as we grow, we have a growing number of colleges and universities that we work with, we have a growing number of professional sports teams that we work with, we’re starting to have this reach that touches most of the continental United States. And I think that’s a powerful mechanism by which we can leverage the relationships and the education that we’ve been able to provide to then take that next step into state and federal level advocacy. And I think, you know, there’s, like I said, there’s so many great organizations, like the everylife Foundation, and the National Organization for Rare disorder, rare disorders that do a lot currently on policy. And I think it’s being able to amplify what what is already being done was already being said, opportunities to advocate for things like more funding for the NIH, newborn screening and genetic test, access to genetic testing, these are the things that really help us understand and and inform our decisions as we move forward as a community. And so those are the things that we’re really want to get to. But I kind of have these two things that I believe have guided us to this point. And I always ask myself these these two questions. Before we really do anything, whether it’s a new initiative or your whatever program. The first is, can we put everybody in a position to be successful? It is incredibly important to me that regardless of who you are, whether you’re an employee, whether you’re a family, part of our program, whether you’re an athlete, whether you’re a donor, can we fulfill our and of what we’re asking? And if we can do that. Good. And then the second piece is, is everybody having an are we putting people in a position to have a quality experience with our organization, and as you’re the leader of this organization, I believe it is my top my my responsibility to ensure that that is true for employees. It’s true for the athletes, it’s true for the families. And it’s true for the donors and sponsors that support us. And those two questions are the things that can sometimes lead us to be more measured and methodical, and what we do. And there’s a lot of potential for what we can do as an organization. But I add every step along the way, I want to ensure that people are having a quality experience, and that we’re doing all that we can to hold up our end and ensure that we’re putting people in a position to be successful. And that sometimes means that we have to sit on an idea or a plan until we’re ready and able to execute it. And I think that’s where you are, our growth has been a little bit measured and methodical, but really about focusing on quality and knowing that the community that we serve, often they have challenges when they go to the store, they have challenges when they go to school, they have challenges when they go to work. If they’re going to interact with our organization, I do not want it to be a challenge. And so that’s why we do what we do and kind of how we do it. And, you know, I’ve I’ve received a lot of feedback and criticism of why don’t you do this? And why don’t you do that? And why why is why are you doing this yet? And it’s, it’s understood, and I get it. And, you know, I just want to make sure that we’re doing things the right way and building that strong foundation so that when whenever we take that next step, we’re able to rely on everything that has come before it to make sure that we’re successful. Yeah,

**Michael Hingson ** 49:24
I hear you. And I know, I’ve been involved in advocacy for a long time. I’m a member of the largest consumer organization of blind people in the United States, the National Federation of the Blind, and back in the mid 70s. I think 1974 Maybe it was 73. But I think it was 74. The the organization started encouraging people to come at a particular time to Washington and started creating programs to advocate for particular legislation. And one of the things we learned early on is you know, You don’t want to be a lobbyist, you don’t want to hire a lobbyist. It’s all about education, more than anything else, which is what I hear you doing. But it is a major effort to make it happen. On the other hand, there have been a lot, a lot of successes dealing with issues regarding blind people. And there’s still some going on, and that have been going on now for a number of years, it’s definitely more of a challenge to get some things through Congress these days, just because of the way things are. But still, it’s it’s possible, but but it has to be the right thing at the right time. So I hear exactly what you’re saying, and you’re really being very methodical about it, maybe starting at the state level, would be easier, because then you don’t have to have such a huge process and undertaking to get something done. But those, again, are things that you clearly I think in listening to you study very well, and decide what to do at what time to make it the most effective thing it can be, which is, which is really good.

**Rob Long ** 51:03
Thank you. Yeah, I, I, I’m really excited about the overall direction of the organization. And, you know, I haven’t been doing it this long. But I believe we’re just kind of scratching the surface of what we’ll be able to accomplish in the future. And I believe that if we continue down this path, we continue to ensure that we’re taking care of of the small things, we’re taking care of ensuring that, you know, people have that quality experience that our employees are being given the tools and resources that they need to do their jobs. Well. You know, I believe that that will, we’ll get where we’re going in time. And it’s just a matter of continuing to to make those right decisions and go down the right path and move things forward.

**Michael Hingson ** 52:01
What do you find that athletes successful athletes today are getting out of associating with uplifting athletes and rare diseases.

**Rob Long ** 52:13
We have the absolute privilege of working with some of the best people on this earth who also happen to be incredible athletes. I think thinking about the the specially the collegiate athletes that we work with, they have so much going on kind of in their lives, they’re they’re playing a high level of sport. They’re at a high level academic institution. There’s the social life that happens at college, and yet we have these these student athletes, and that, you know, that go on to sometimes be professional athletes that have the wherewithal at that age to say, how can I use the platform and the presence in the audience that I have, and make this world better. And for me, all the word trying to do is give them the tools that they need, understanding their limitations, your time limitations, their you know, financial limitations, what is it that you need from us in order to kind of help make this, this cause something that you’re going to advocate for, and we have an awesome team here at uplifting athletes, that does a great job with that. And I think from the athletes, I think a lot of them, most of them do this out of the kindness of their heart, they want to give back they see that they can make the world a better place. But at the end of the day, I think what they get out of it is, is tremendous, because they might be somebody who doesn’t get to play in the NFL or doesn’t get to play professional soccer or whatever the sport is that we’re working with. And what they can do is sit down in a job interview and say, Hey, I played football at Penn State. I graduated with a three six GPA. And I raised $50,000 for the rare disease community while I was in college, and that person is somebody that I want to hire and a lot of companies want to hire. And I think it’s that that emotional intelligence that it shows and, you know, some of the athletes we work with have a connection to the community and some don’t. And I think it’s an incredibly inspirational to me to see how they all come about it from their own ways. You know, for me, I’ve experienced this right. I’ve been through a rare diagnosis. My family has been through through several and I get it and we have so many student athletes that we work with that they just want to help. They want to find a way to give back and I think that’s just shows me there’s there’s a lot of good people in this world and the humanity and the humility that they have is, is exceptional.

**Michael Hingson ** 55:15
Have you had any success at dealing with professional athletes after college?

**Rob Long ** 55:19
We have. We’ve had a few that we’ve worked with that have been absolutely incredible. Two, two that I’ll share with you is one. One is somebody who has literally came through our program. He was a leader of our Illinois chapter of uplifting athletes, and played on the offensive line at the University of Illinois had a great career there, ended up being drafted by the Kansas City Chiefs and won a Super Bowl his first year. His name is Nikki, Nick allegretti. And Nikki has been somebody that has just been incredibly loyal to us as an organization. He has done a tremendous amount in the Kansas City community for the families there that have been impacted by a rare diagnosis. He’s hosted families at private tours of Arrowhead Stadium. He’s come to Kansas City Royals games with us where we’ve been hosting families and doing meet and greets. He’s hold holds camps at his high school. That benefit of both being athletes and for him to kind of come through this program as as a young college student, raise money at the college level, then use his platform as an NFL player to welcome in the Rosie’s community has been fantastic. And then probably about three years ago, we were connected with a major league baseball player named Michael a tower. Michael, at the time, when we connected with him was a centerfielder for the Kansas City Royals. And we didn’t know Michael’s kind of whole story. But Michael was the sibling of somebody who lost their life to a rare diagnosis. Michael’s sister died at the age of 21, from a very rare disease. And, you know, he came across our organization and just kind of loved the ease by which he could find a way to support and doing what he was already doing. And so Michael launched a hits campaign and raise money for every hit that he had during the MLB season. And this year, he is doing a home runs for rare diseases campaign and raising and donated himself $75,000 and getting the community to raise money for every home run that he hits this season. And so Michael’s been centerfielder. Now with the Minnesota Twins, this is his second year with them. And it’s been August, his first year with me he was traded last year from Kansas City, but he’s been a fantastic ambassador and advocate. And just being able to use this platform. Every time he hits a homerun the twins talk about it, they do an in stadium announcement they do posts on social media. And I think it’s it’s that platform of sports where we’re able to reach people that are in the rare disease community and be able to educate them and make them aware about the things that are happening, which is really special.

**Michael Hingson ** 58:19
Yeah. No, no doubt about that. What? What kind of results can you point to that uplifting athletes has really brought through the years.

**Rob Long ** 58:32
So I think for us the the the challenge with funding, the research that we fund is that it’s very early stage. The amazing thing is that we have already had three researchers receive supplemental funding from the NIH. So this means that they’ve been taking those seed grants that we’ve provided, and being able to turn that into a larger sum of money to continue that research to move that research forward. So that for one is something that’s really exciting. We’ve had over 800 people come through our equity experiences program since that was launched. Another thing that’s just been incredible and providing hope and opportunity for families that that would not have them. And that’s something that we’re going to continue to do and continue to grow and invest. The one other story that I’ll share with you on the research side, talking about impact. This year, I was preparing for our young investigator draft. And I previously mentioned that the chemotherapy that I took was the first ever chemotherapy approved to penetrate the blood brain barrier. It is still today the first line treatment for somebody diagnosed with a glioblastoma. I got curious about where that that medicine came from and who was essentially the inventor who was responsible for developing this therapy. And what I learned was that there was a gentleman named Dr. Mouth Um, Stevens and Dr. Malcolm Stevens. I looked him up, he is still alive. He’s 85 years old. He’s still doing research at the University of Nottingham in England. And so I reached out to him, I said, Dr. Stevens, it’s a pleasure to meet you. My name is Rob, this is my story. This is the research that we fund and essentially, just wanted to thank you for for your work and, you know, developing the chemotherapy that saved my life. And about 10 days went by and I didn’t hear anything and kind of figured that maybe email communication wasn’t the best thing for somebody who is 85 years old, but I did eventually get an email back and Dr. Stevens wrote me, wrote me back and he said, Rob, it’s so nice to hear from you. You know, I love the program that you’ve been, you’ve been running and I want to share with you a little story about how I developed Temodar, which is the chemotherapy and he said, back in the early, late 1970s, early 1980, he was trying to conduct research in in Birmingham. And at the time, in Birmingham, there was kind of like, general chaos, there was over 20% employment, there was strikes, there was riots, there was just kind of unrest in the streets. But all the while there was this, this Dr. Malcolm Stevens who was trying to do research, and he received a small seed grant from a nonprofit in England. And with that seed grant, he hired a research assistant. And him and his research assistant, whose name was also Rob first synthesized temozolomide in April of 1980. It took 27 years for temozolomide or Temodar to be FDA approved, but it was FDA approved in 2007. And 36 months later, I was diagnosed. And so it is that very research that was invested in in the 1980s. That is the reason that I’m here today. And so we’ve now funded 44 different researchers through our program, and my hope is that decades from now, each of them will have the opportunity to meet people that that they’ve impacted their lives with the work that they’ve done.

**Michael Hingson ** 1:02:22
Now, as for you, have you played any more football at all?

**Rob Long ** 1:02:27
No, I

**Michael Hingson ** 1:02:30
was not going to do that.

**Rob Long ** 1:02:32
I was I was done with that. I’ve moved on to other activities. I played hockey my whole life. But have recently well, for a while. I really love playing golf. So that

**Michael Hingson ** 1:02:48
was gonna bring that up and ask him.

**Rob Long ** 1:02:51
I told my wife, I needed some competitive outlet. So I’ve been doing golf, which I absolutely love. So I have not lost the competitive side of myself just trying to find different outlets for it. And

**Michael Hingson ** 1:03:05
yeah, you just mentioned So you’ve now gotten yourself married, how long you’ve been married?

**Rob Long ** 1:03:11
It is four years now. Well, not quite four and a half years. We my wife and I got married in May of 2019. And I aiming incredibly lucky, I often believe that I am the luckiest person in the world. You know, not only for what I’ve been through, but for the people that I have in my life and my wife is absolutely at the top of that list.

**Michael Hingson ** 1:03:35
That is cool. And then you have two dogs and you’re going to train them to go chase golf balls or what I do.

**Rob Long ** 1:03:44
I don’t know that training, training them to get golf balls, I might be a lost cause I just need to work on them not ruining the house first. There. Your first dog is a an Irish doodle. So he’s an Irish setter. A standard poodle he was a COVID dog that we got at the beginning of the pandemic because my wife insisted that we had nothing else to do so my lava dog might as well have a dog. And then little over a year ago, we my wife was scouring the SPCA website and came across a rescue dog that was also an Irish doodle. And so we got our second dog his name’s rocket and he’s got half the size of Winston but has has firmly cemented himself as the alpha dog in the family. And so the two of them get along great and yeah, they’re there. They’re awesome. Yeah,

**Michael Hingson ** 1:04:47
having animals is so much fun. We have a well I have my wife passed away last year we were married for two years and she she finally just the body wasn’t keeping up with the spirit but I still have our are a cat that we rescued eight and a half years ago. And then also I have a guide dog Alamos. So it’s me and the two critters and they keep me in line. And as I tell people, if I misbehave I’m sure I’m going to hear about it from Karen, somewhere along the line. Works out,

**Rob Long ** 1:05:16
I’m sorry for your loss. But I’m glad that you have some unbelievable memories to hold on to. And the two creditors there to keep the company

**Michael Hingson ** 1:05:27
40 years of marriages and memories is always a good thing. So I can’t complain a bit. No regrets at all. But I’m really glad to hear your story. And I’m glad we had the chance to do this. I really appreciate your time. If people want to reach out to you and learn more about uplifting athletes and so on, how do they do that.

**Rob Long ** 1:05:46
So they can find us at upliftingathletes.org. And across most social media platforms just by searching up within athletes. Personally, if you want to reach out to me, my social handles are almost all at rob R O B long, four, seven. So whether that’s on Instagram or Twitter, or Gmail, wherever you need to get to me, you can and it’d be a pleasure to connect. But yeah, thank you so much for having me. I had the opportunity to listen to some of your previous shows and your your story is nothing short of amazing. And so I appreciate you taking your everything you’ve been through and turning it into a positive and, and talking to people like myself. So thank you for all that you.

**Michael Hingson ** 1:06:41
If any thing comes up any way I can help, don’t hesitate to reach out, you know how to get a hold of me and would love to be supportive in any way that I can. Awesome. Thank

**Rob Long ** 1:06:52
you so much, Mike. Well, this

**Michael Hingson ** 1:06:53
has been fun. And I hope all of you have enjoyed this and that you’ve learned some things please reach out to Rob, I’m sure that he would be glad to talk with you. Of course, I want to hear what you have to say. So I would really appreciate it. If you could reach out to me, let me know your thoughts, your comments or observations. You can reach me at Michaelhi at accessiBe  A C C E S S I B E.com. Or go to www dot Michael hingson H i n g s o n.com/podcast. And wherever you’re listening, please give us a five star rating. And I certainly asked you to please do all you can to support uplisting athletes. We all really appreciate it and value what Rob and the people are doing and we want to all help any way we can. So one last time. Rob, thank you very much. This has been a real joy to have you on.

**Rob Long ** 1:07:46
Thanks so much for having me.

**Michael Hingson ** 1:07:51
You have been listening to the Unstoppable Mindset podcast. Thanks for dropping by. I hope that you’ll join us again next week, and in future weeks for upcoming episodes. To subscribe to our podcast and to learn about upcoming episodes, please visit www dot Michael hingson.com slash podcast. Michael Hingson is spelled m i c h a e l h i n g s o n. While you’re on the site., please use the form there to recommend people who we ought to interview in upcoming editions of the show. And also, we ask you and urge you to invite your friends to join us in the future. If you know of any one or any organization needing a speaker for an event, please email me at speaker at Michael hingson.com. I appreciate it very much. To learn more about the concept of blinded by fear, please visit www dot Michael hingson.com forward slash blinded by fear and while you’re there, feel free to pick up a copy of my free eBook entitled blinded by fear. The unstoppable mindset podcast is provided by access cast an initiative of accessiBe and is sponsored by accessiBe. Please visit 
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