The Journey from Patient to Advocate to Leader: Changing the Clinical Research Game


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Rob Long, Executive Director, Uplifting Athletes
I will talk about my journey from Division I football and top NFL prospect to cancer patient. My experience of undergoing chemo and radiation and fighting through a battle with brain cancer has enabled me to leverage my story to make a difference in the lives of those affected by rare diseases. The attendees will gain insights into what it means to be a volunteer at the front lines of oncology research and clinical trials. New approaches to partnering with advocates, disease communities and young researchers will be shared. In addition, we will discuss the future of rare disease research and outreach and illustrate where industry and the patient community can go together in collaboration.

Transcript

John:

We would like to welcome you to the Sanguine Speaker Series webinar, The Journey From Patient to Advocate to Leader: Changing the Clinical Research Game, presented by Rob Long. Rob is the executive director of Uplifting Athletes. I will now hand it over to Rob.

Rob Long:

Thank you so much, John and thank you guys for having me and allowing me this platform to share my story and more about what we do within the Uplifting Athletes organization. I’m hoping that those in attendance will find this relevant. So, this is a little bit of a patient story, my own patient story, and also a little bit of how I’ve been able to leverage what I’ve been through in my professional role and working as the executive director of Uplifting Athletes, and how we’ve been able to support and fund rare disease research.

Rob Long:

So, we’re really excited about this, and so I’ll get started here, but going to the beginning of my story. So, all the way back in 2006, I was a senior in high school. I was given the opportunity to play football at Syracuse University, and I was incredibly humbled by that. I ended up starting as a freshman, a true freshman, and ended up being an All-American my freshman year and was fortunate to have a great career at Syracuse, and I had worked really hard at my craft. I had worked to be one of the punters in the country, and as fate would have it, working towards my senior year I was the best punter in the country going into the NFL Draft, and was really excited for the next chapter of my life playing in the NFL and continuing to live out my dream.

Rob Long:

Unfortunately, about five days after my last regular season game at Syracuse, I was diagnosed with a rare aggressive form of brain cancer. As you can see here, they found a tumor. It took up about a quarter of my brain. The second image on your screen is basically a cutaway, so if you were looking at my face straight on as the back right portion of my brain, that they found what turned out to be a malignant tumor.

Rob Long:

So, I went from a couple of days removed from Thanksgiving Day in 2010 to playing in my final game in college on a Saturday and then five days later was found to have this large tumor in my brain, and my world was flipped upside down, and for me it took a ton of support from my family, my teammates to really get me through all this, and I’ve been so fortunate, and so blessed, but at the end of the day I had to find a way to get through and just wanted to live my life.

Rob Long:

I didn’t want to give up everything that I had worked so hard for, and so after my diagnosis I took some time to sit down and really understand what was going on and what I could do in order to get better and be healthy again, and to have another opportunity at life. At the end of the day, what I wanted to do is I wanted to play football and I wanted to play in the NFL, and I didn’t want to be defined by this cancer diagnosis, and I wanted this to only be a bump in the road for me and not something that was going to be life defining and to effectively end my football career.

Rob Long:

And so, what I did next was I put everything I had into making it to the NFL and to pursuing a dream of mine that I had to find my way back to the top of that mountain. I went from the number one punter in the country to laying on a radiation table in the span of less than a month. And so, for me it was a quick and significant change in my life that … it was definitely a setback, and for me it was trying to understand how I respond to what has happened, and what I had learned and what football had taught me was that nothing comes easy and that it requires a lot of hard work in order to get to where you want to be.

Rob Long:

And so, I had spent a lot of time working on my craft and now it’s time for me to take those same lessons that I learned by playing football and to put that into this fight against cancer. And so, my daily routine every day was to wake up in the morning, I would take some medication, and then it’s like a prep for chemotherapy. I would take my chemotherapy. We would go down to the hospital every day where I’d receive a radiation treatment. On the way back from the hospital, I would try and rest or take the train in every day into the city and then I would come back, eat some lunch, and then I’d go to the gym, and I’d work out, and then after working out I’d go to the field and practice punting and trying to find a way forward.

Rob Long:

And ultimately, after my diagnosis I ended up working out for about a dozen NFL teams, and unfortunately I wasn’t able to make the NFL, but I was able to get back to a point where I had justified myself that I was healthy enough and that I had actually become a better punter than I was before my diagnosis, and the NFL is just a difficult thing to break into. For a punter, there’s 32 jobs in the world and everyone is filled the year prior. And so, it takes pretty unique circumstances to be able to get in the NFL when everything’s going your way, and when it’s not, it makes it that much more difficult, but for me it was a decision that I came to with a lot of thought, but also brought me a lot of peace and closure that two years after my diagnosis I had gotten myself back into shape into a position where I felt that if I wanted to I could’ve played in the NFL at that point.

Rob Long:

And so, it came to me to make a decision in my life that I had to understand that what I had been through and what I had experienced wasn’t going to be dependent on football. It was going to be dependent on me owning my story and taking it upon myself to make something of my experience and that’s what I was able to do. I was able to find an opportunity with an organization that combined the world of athletics and world of rare disease all into one.

Rob Long:

So then, I became to see this opportunity that there was going to be something for me after football. I knew I was going to be successful with or without football, so without football, what was that next step going to be? And for me, I heard about this organization called Uplifting Athletes. It’s an incredible organization that was founded all the way back in 2007 by a gentleman named Scott Shirley and Scott’s story is that he played football at Penn State. His father was diagnosed with a rare form of kidney cancer, and essentially at that time was given no hope, no chance, no options, and so Scott didn’t take that for what it was, accepted it sitting down and said, “I play football at Penn State, and if me or any of my teammates do anything it ends up on the front page of the paper here, and so why can’t we use that same platform and take that and make it something that we can help people with?”

Rob Long:

And, that was his inspiration for the Uplifting Athletes organization. And so, what Scott did was put together a fundraiser at Penn State that ended up raising over $10,000 in its first year. They took that money and went to the Kidney Cancer Association and said, “Hey, we want to help support new therapies that can come to market to help people like Scott’s father.” And, they ended up being the largest donors of the Kidney Cancer Association that year and were honored to speak at their gala and the really neat part about all of this is what Scott did and what the teammates did at Penn State eventually made its way into finding a treatment for people like Scott’s father.

Rob Long:

Unfortunately, it came to market just a little too late for Scott’s father and he ended up passing away, but he ended up outliving his expectation by another six months and it was something that after his father passed away, this felt like Scott’s calling to start this Uplifting Athletes organization and it’s really been my honor to be a part of this organization and to step into a leadership role as the executive director back in 2018 has been a dream come true for me.

Rob Long:

I think what has been most appealing to me is that this organization has provided me almost a seamless opportunity to share my story, but to also talk about the non-athletic side of my story that I think is more important and can be more helpful to so many people, and especially those in the research community and other patients that are going through what I’ve been through.

Rob Long:

And in large part, before I get into the research side of this, I think one of the things that’s always resonated with me and I know we have some researches on the call today, and I know that there’s not always the immediate one-to-one connection between the work a researcher’s doing and the impact that it’s having on human lives, and especially the early stage research that’s so vitally important, but the reason that I’m here to be able to talk with you guys all today is that there are researchers and there are people, there are organizations that spend time, money, and resources to find a treatment and to find a cure for the type of cancer that I have.

Rob Long:

Back when I was diagnosed in December 2010, the five-year survival rate of my cancer was 15% and I was given about 36 months to live from the day of my diagnosis. I had just turned 22 about six days before my diagnosis, and that was a really, really difficult for my family and I to swallow that after 22 years of life that I probably had less than three years left, and for me the more I learned and the more I understood about everything that I had been through is that I have so much gratitude and appreciation for the work that is being done in academia, in the pharmaceutical industry, and by biotechs, and in collaboration with clinical research organizations to make an impact on people’s lives.

Rob Long:

My parents and now my wife, I’ve been able to spend time with them that I would not have had if it weren’t for the research, and time, and money, and the resources that were dedicated years, if not decades before I was ever diagnosed that ultimately led to me having an opportunity to take a therapy that has extended my life and has allowed me to be cancer free for almost nine years, coming up on 10 years now believe it or not.

Rob Long:

So, I don’t want that piece of this to get lost in that what I’m talking about and my appreciation for what the researchers do and I’m sure the patients understand this that I feel so thankful and so fortunate that I’ve been given this opportunity and when I was asked to give this talk and to share my story, I think it’s so important that that is emphasized and that’s understood is that I’m here. This is a thank you for all of you guys that put your time and effort into research and to supporting people like myself and my family. This is something that I believe very strongly in, and ultimately the second half of the presentation, this is really what has driven me so far through our Young Investigator Draft Program and what we do with Uplifting Athletes.

Rob Long:

So, the mission of Uplifting Athletes is to inspire the rare disease community with hope through the power of sport. We believe that we have a unique opportunity to leverage the platform that athletes have and then leverage that platform to support the rare disease community and we think that this is something that by marrying these two communities together we can make unbelievable progress. I think what we’ve seen, the impact that it’s had for the athletes that we work with is pretty unbelievable.

Rob Long:

I think it’s incredibly humbling for them to really get the chance to meet the people that they’re having such a significant impact through our program, and so this is something that for us it really works both ways that not only are we trying to help the rare disease community, but I think we’re creating better people, better leaders out of the athletes in the athletic community that are involved with our organization. So, something that we’re incredibly proud about and continue to develop the relationships that we have with our athletes.

Rob Long:

So, we have four programs that run all … basically, all of our initiatives run through. Our Uplifting Leaders program, Uplifting Experiences, Rare Disease Awareness, and Rare Disease Research. Uplifting Leaders is our network of collegiate Division I football programs we work with. We have about 21 Division I football schools that are Uplifting Athletes chapters, schools that I’m sure many of you have heard of. Schools like Notre Dame, Florida State, Clemson, Penn State, Syracuse, Illinois, North … a lot of big schools that we’ve been fortunate to work with.

Rob Long:

All of our chapters are run by student athletes on the football team, and the idea is that we are providing these student athletes an opportunity to build out their resumes to give back and to provide the platform that’s fit for them and their schedules. We understand many of us at Uplifting Athletes are former student athletes that understand that commitment that these athletes have to their school, and to football.

Rob Long:

So, what we do is we tailor a program that [inaudible 00:16:25] schedules and their time availability, but also still helps them to build out their skills for their development after football, that they’re ready to step into the job market that we’re providing, and some transferrable life skills that they will need and all at the same time they’re giving back and impacting an organization, and a community that is so thankful for their help.

Rob Long:

Uplifting Experiences is the integration of where the partnering of our athletes and our rare disease families. A lot of that happens through our NFL partners, so we’ve hosted families at the Seattle Seahawks and the Buffalo Bills just within the last year with a number of other ones planned obviously. Things are a little uncertain now, but the idea behind the Uplifting Experiences program is to really welcome the rare disease patients and families into the athletic community, allow them to go see a game, allow them to get a tour of the facilities. And so, we’re always trying to build up that human interaction pieces through the Uplifting Experiences program.

Rob Long:

Rare Disease Awareness is pretty much baked into everything that we do as an organization, and then the Rare Disease Research aspect of this is what we’ll spend the most time on and that manifests itself through our Young Investigator Draft program.

Rob Long:

So, the Young Investigator Draft was launched in 2018. We just were fortunate to hold our third annual Young Investigator Draft on March 7th. I think we were the last major event to happen before things really went crazy with the coronavirus, so we were fortunate to get that in and recognize the researchers this year. I have a brief video that I’ll show you that highlights that event, but really, the idea that led to the development of the Young Investigator Draft was for us as an organization our old business model was that we had this network of chapters.

Rob Long:

Each chapter represented a different rare disease and then the money raised at that chapter would go to fund research in that rare disease, and what we were finding was that there was lot of difficulties as the organization began to grow, the number of chapters we worked with began to grow, and the turnover from year-to-year with the student athletes that were chapter leaders having different connections to the rare disease community.

Rob Long:

So, the chapters switching what their affiliation was each year, and so really what we wanted to do to make things a little bit more easier and simplified from a marketing perspective, but also to have a larger, more significant impact on the research side was that we were able, through the development of the Young Investigator Draft to aggregate the funds raised at the chapters to give larger, more meaningful research grants to these young investigators and through the 2020 Young Investigator Draft we’ve now funded over $300,000 in rare disease research grants to young investigators.

Rob Long:

This is something that we’re incredibly proud of for an organization that’s our size. We’re still relatively small and building up, but to be able to fund $300,000 in research in the last three years is something that we’re incredibly proud of and we’re going to continue to push forward to continue to raise that number and to raise the number of researches that we supported. So, through this year we’ve funded 18 different researchers.

Rob Long:

So, here’s a video. I’m going to let this play. This is a highlight of the 2020 Young Investigator Draft.

Speaker 3:

A draft is something you dream about as a kid when you’re playing sports in the backyard and you have these dreams to be a professional athlete, no matter what sport you want to be in. The pinnacle of that is being drafted.

Speaker 4:

Around the country, we’re celebrating young, up and coming athletes. Tonight in this stadium, we’re celebrating up and coming researchers.

Speaker 3:

The draft day is the culmination of that work, that time you put in, the blood, sweat, and tears that somebody has recognized that work you put in and think that you’re good enough to play for them, and that’s how for us with the rare disease community, that sometimes these researchers get overlooked, but they’re having such a huge impact on what’s happening in the rare disease space that we want them to know that they’re doing, we want you on our team. You’re doing amazing things, we recognize it, and that’s why we want this draft to be the way it is.

Speaker 4:

Tonight this is about celebrating them as if it was the NFL Draft. Uplifting Athletes was founded with the mission to inspire the rare disease community with hope to empower sport. One of the ways we do this is through recognizing researchers and scientists in the rare disease field for the work that they’re doing. They will ultimately be the ones who are responsible for the treatments and cures that we see in the rare disease community.

Speaker 3:

There are 30 million college football fans in America, and there are 30 million rare disease patients. Which of those two groups do you think we know more about? Tonight that’s what it’s all about.

Rob Long:

All right, so that was the video of the highlight of the 2020 Young Investigator Draft, and a couple of things I’ll point out there. So, the idea of the Young Investigator Draft is to quite literally mirror the NFL Draft. What we tried to do is to use the platform that we have as athletes to elevate and celebrate young investigators in the rare disease research community who are the ones that we know are going to be the future leaders that are finding the treatments and cures that we see in years to come.

Rob Long:

And so for us, this is an opportunity to pull those researchers out of the lab and to really recognize them for the important and pivotal work that they’re doing to support patients and patient families in the rare disease community. We hold this event at the Philadelphia Eagles stadium, Lincoln Financial Field. It’s one of the things that I think provides more appeal and broader appeal for the event. We provide stadium tours, we’re allowed to give people that game day experience by having it an NFL stadium and really pull together all of the different aspects to what we’re trying to capture as an organization from the athletic and the rare disease side, as well as the research side of this.

Rob Long:

So, it’s a very unique event. It’s something that we’re continuing to develop and build, but really something that we’re really proud of and think the impact that it’s had already, but also is going to have is going to significant for years to come, and this isn’t also just about the event itself, but I think a big thing for us is about how we fund the research and how we try to enable these researches moving forward.

Rob Long:

So, what we do I think that’s a little bit different than a traditional grant process is I think a more traditional grant process would be a grant, or an RFP is put out, researchers read through that proposal, the spend time, oftentimes hours on end to figure out what the proper application process is going to be, what information they need to detail, what parts of their research need to be discussed, and provide all this very detailed information, and then they go through that process, then they do it again, and again, and again, and again.

Rob Long:

And, one of the things that has been so discouraging for me being on the patient’s side of this is that we have these unbelievably brilliant researchers, and unbelievably brilliant minds who are the best of the best, and they spend a significant amount of their time trying to seek funding or secure funding for their research, not actually doing the research, and for me that’s something that’s unacceptable, and something that we as an organization want to lead in changing how that process happens, so that we can better enable the researchers to utilize their time better on doing the research that needs to be done.

Rob Long:

Uplifting Athletes partners with patient advocacy organizations who nominate researchers within the rare disease space. So essentially, we would partner with an advocacy organization that would nominate a young investigator that’s conducting research within their disease space. So, for the 2020 Young Investigator Draft we put out an RFP and that RFP was geared towards patient advocacy organizations and the idea behind this was that we wanted patient advocacy organizations to build relationships with young investigators, with researchers, recruit researchers to research within their disease state and then nominate those researchers through the Young Investigator Draft to be recognized and to be funded by Uplifting Athletes.

Rob Long:

The funding that these researchers receive is an unrestricted grant. It’s to be used at the sole discretion of that researcher. We wanted these grants to be used to facilitate research and to move research forward, and we believe that the people who best know how to do that are the researchers conducting the research, so we didn’t want a lot of red tape, a lot of restrictions around how the money was used, what it was used for.

Rob Long:

Our end goal was to move research forward as best, and as quickly as possible and we believe that the best way to do that is by leaving those decisions to the researcher themselves. And so, really this was something that we believe really strongly and that we didn’t want to make this more difficult, and that we wanted to encourage the collaboration between advocacy organizations and researchers. There are so many times where there’s researchers that are looking for an organization to work with and there’s so many organizations that are just trying to find a researcher that will take on that research, and we think that by celebrating, recognizing, and ultimately forcing this collaboration, we’re going to be better for it in the longterm.

Rob Long:

We found that anywhere from 40, 60% of the researcher’s time was spent on fundraising, again, just not an acceptable amount of time for somebody who is best suited to be doing research, and the analogy that we used was that imagine if an NFL player had to spend Monday through Thursday fundraising, so that they could buy equipment to practice and play the game on Sunday. It doesn’t make sense, and I think we as a research community, as a country, we need to do a better job of enabling the people that are at the very core of finding research and finding solution to our medical problems.

Rob Long:

I think a perfect example of how this all manifests is that especially within the rare disease space is that research that we have funded through the Young Investigator Draft, one of the organizations that we work with is called Castleman Disease Collaborative Network. It’s led by a Dr. David Fajgenbaum. If you haven’t had the opportunity to hear his story or to know him, he’s an unbelievable individual and the Castleman Disease Collaborative Network is an outstanding organization.

Rob Long:

Dr. Fajgenbaum recently published a book called Chasing My Cure, and his story is that he is a researcher, he’s also an athlete. He played quarterback at Georgetown, got his master’s in public health from Oxford University, and then did a joint MD, MBA program at Wharton at the University of Pennsylvania, and he’s an incredibly young investigator that we funded in 2018, and what that research actually found is that one of the reactions that the body has during Castleman’s disease flair up is extremely similar to that of the [inaudible 00:29:24] that the researchers are seeing now with coronavirus, and it’s just been so fascinating for me to see that research that was funded towards rare disease and Castleman’s disease. The translatable and transferrable nature and what we’re learning from that research.

Rob Long:

I think what’s so amazing about rare disease research is that you go so deep into a very specific rare condition that you’ll end up learning so much more about that body part, or that reaction that the body has and oftentimes that information that is attained is transferrable as in relevant to people to have much more common illnesses and this what I think is so unbelievable about rare disease research and the importance of funding rare disease research is that what we’re unlocking is really not only the keys to understanding certain rare diseases, but the body as a whole, and ultimately that’s helping us move research as a whole forward.

Rob Long:

It’s really a part of the mission of what we do through the Young Investigator Draft, we funded six researchers each year and the idea is that those researchers are doing different types of rare disease research, and we’re basically spreading our resources out in the rare disease community for these researchers to go to work to understand different elements of different rare diseases and utilize that information to support not only the rare disease community but the medical community with what they find and the information that they’re coming to understand through their research.

Rob Long:

Again, the biggest thing for me, and I’ll say it again, is collaboration. The reason that we have set up our Young Investigator Draft and our research program the way we have is to encourage and to celebrate and to recognize collaboration. We believe that the RFP that we structured put us in a position to encourage the collaboration between patient advocacy organizations and researchers, and if we can imagine that all of these researchers had patient advocacy organizations that they could rely on to regularly seek funding to support them, to provide a bridge from the patient to the researcher, so that these researchers don’t have to go their entire careers without meeting a patient or understanding the needs of the patient. I think another piece of why we developed this the way we did is that we want to fund researchers that have and are willing to develop relationships with patient advocacy organizations and patients.

Rob Long:

I think there’s an unbelievably important element of research and that is knowing what the patient needs and what the patient wants, and I think there has been times and instances where research is being done or conducted because a researcher thinks that they know what is best and oftentimes the patient is the one that’s living with this that they know that there’s side effects, that there’s elements of what they deal with that affect their quality of life more than others, and that information can really only can come from the source, it can come from the patient.

Rob Long:

And so, by encouraging this collaboration between researchers and patient advocacy organizations what we hope is that we’re not only funding better researchers, but we’re funding better educated researchers of the needs of their patient populations. And so, this is just a piece of what we think that we can do by leading by example that we think is just so important that everybody is working together in this ecosystem. I firmly believe that no one non-profit organizations, no pharmaceutical company, no researcher is going to be able to fix all of problems of just one disease, let alone the more than 7,000 rare diseases that we have by his or herself or their self.

Rob Long:

And so, I’ve always been a proponent of collaboration and working together, and I’m hopeful that this is what the Young Investigator Draft will continue to be and continue to build into as we move forward. And so, it’s something that we’re really excited about for the future in the development of this, and to continue to celebrate these researchers and to elevate them, so that what they’re doing and that their stories and their research is heard, but it’s heard by academia, it’s heard by industry, and patients, and backed by leveraging the platform that we have with athletes in the athletic community.

Rob Long:

I think that we can make this become something that is much more mainstream because the number of people affected by a rare disease, over 30 million Americans, it’s 10% of Americans are affected by a rare disease. This is a population that we can have a large impact with the research and what we’re trying to move forward. So, just really excited about this, and I just wanted to finish with as an organization we think that there’s a lot of different things that we can do through working with athletes and the rare disease community, and we want to continue to empower and inspire these patients to speak up and tell their stories because it’s what drives everything around us, and I’m hopeful that there’s people that hear my story and hear what we’ve been through as a family and understand that what you guys do every day makes such a significant impact to human people, to lives that people lead and the amount of time that they get to spend with their loved ones and it’s so important and so meaningful, and I don’t want that aspect to be lost in all of this.

Rob Long:

So, I’m excited about the future of research and what’s been happening. I think there’s things that we can definitely continue to improve, but I’m really excited about what we’re doing and how it’s all coming together. And so, in closing, I want to thank you guys for your time, and definitely happy to take any questions that you guys have.

Lisa Scimemi:

Rob, I can read you some of the questions that we’ve gotten.

Rob Long:

Okay.

Lisa Scimemi:

So, the first one is, in the Young Investigator Program, where are your 18 researchers from? Are they mostly academic or are they mostly pharmaceutical researchers? And, the next part of that is what rare diseases have they focused in?

Rob Long:

That’s a great question, so our researchers are primarily academic with a couple of exceptions. We funded researchers from Columbia, the University of Pennsylvania, the Children’s Hospital of Philadelphia, University of Minnesota, SickKids Hospital in Toronto, so it really spans all of North America. We’ve had researchers from UC Irvine and Stanford, so really has spanned the entire country and even into Canada. The types of rare disease research that we have funded also runs the gamut. What we initially had identified for the Young Investigator Draft program was an idea or a concept that we would like to fund a rare disease researcher in one of five categories of rare diseases and we internally broke up those five categories to represent rare muscular and neurological disorders, rare autoimmune disorders, rare blood disorders, rare genetic disorders, and rare cancers.

Rob Long:

So, we had in theory wanted to fund a researcher in each one of those five categories. That has maintained accuracy pretty much throughout the first three Young Investigator Drafts. It becomes a little bit more difficult when you’re doing the RFP process. We just want to pick the best researchers and the idea behind the five categories is that our investment that we’re making should span the rare disease community, have an impact, not all just be focused on rare cancers, and rare genetic disorders is a little bit of a catch knowing that 80% of rare diseases have a genetic component.

Rob Long:

So, that one, there’s a lot of overlap, but in terms of the types of rare diseases, there are several different types that we focus on, from ALS, to brain cancer, to aplastic anemia, to blood disorders, rare cancers, rare autoimmune disorders like Castleman’s disease, so a wide variety and all of that information can be found on the Uplifting Athletes website both the researchers that have been funded, where they’re from, and the organizations that we’ve partnered with for the Young Investigator Draft at upliftingathletes.org.

Lisa Scimemi:

The next question is, what advice do you have for patients that feel like they’re not being heard from their doctors and how can patients become more of an advocate for themselves?

Rob Long:

That’s a great question, so the first thing with the doctors, one thing to understand is that that is your time with them. You are the customer in that exchange. So, I would take advantage of that time, and sometimes that takes a little bit of preparation. I know if we had questions, we had a notepad when I was going through everything. We would write down questions as they came up, and we’d ever have the nurse’s number to call or we’d bring that with us to our doctor’s appointment, but being prepared and bringing that information with you to your appointment helps you put yourself in more control, more understanding.

Rob Long:

Obviously, when you’re in that situation, going into a doctor’s appointment if it’s a checkup, a little bit easier, but when you’re going to these appointments when you’re seeking a diagnosis, when you’re just learning of a diagnosis, and trying to understand it, I think it’s important to do your research and be prepared as possible to challenge your doctor, ask questions. That’s what they’re there for. They’re there to help you and answer questions that you may have.

Rob Long:

So, that’s a really important piece of it is making sure that you’re prepared for that, and then as far as being a better advocate for yourself, it’s either one of two things. If you are fortunate enough to have a condition where there is a patient advocacy organization, I think reaching out to that patient advocacy organization and seeing how they specifically could use your help, or if you’re in a situation that you’ll feel called to start your own patient advocacy organization for a disease or a condition that doesn’t currently have one, then there’s a ton of resources, organizations like Global Genes and NORD do a phenomenal job of providing resources for people who want to become their own advocates and to stand up for themselves, and to make themselves heard.

Rob Long:

There’s organizations like RDLA, Rare Disease Legislative Advocates, and EveryLife Foundation that work a lot and NORD as well work a lot with legislation in the rare disease space that are always looking for patient voices and patient stories to utilize them in a way that can benefit the broader community, writing to your congressman and congresswomen to share your stories about what you’re going through to enact legislation to get things through that ultimately help the rare disease community are all incredibly powerful ways to use your story, and use your voice as a patient.

Lisa Scimemi:

The next question is, how many patient advocacy groups are in your collaboration network?

Rob Long:

So, it’s a great question. So, we do not currently at Uplifting Athletes have a patient alliance network. We’re working to build that now actually, but we’ve worked with 15 different advocacy organizations through the Young Investigator Draft and a multitude of others through our Uplifting Experiences program. One of the reasons we’re actually building out our patient advocacy network is for the Young Investigator Draft and Uplifting Experiences, so that we can have a patient advocacy community that we can extend opportunities for meeting professional football players or to nominate a researcher to be a part of the Young Investigator Draft.

Rob Long:

So, that is the next step for us as an organization is to develop a patient advocacy network or an alliance that we can have. What we also don’t want to do is create another siloed patient advocacy community. I know there’s ones with NORD and with Global Genes and registries with organizations like CoRDS at Sanford Health, but really what we’re trying to do is figure out the best way that we can approach that patient advocacy alliance and then put that to good use for the rare disease community and within the Uplifting Athletes organization.

Lisa Scimemi:

The next question is, what advice do you have for people with an illness to help them cope and find hope during their treatment or even to help deal with a longterm, not so good diagnosis?

Rob Long:

So, one of the things that I’ve been a huge proponent of more recently because it’s something that is only really … you’ll come to like, for me personally, recently has been the mental health aspect of being a patient, and I think this is also something important for clinicians and researchers to understand is that these patients are humans and we have human emotions and feelings and things that oftentimes are outside of our control

Rob Long:

I was diagnosed with post-traumatic stress disorder stemming from my brain cancer diagnosis and I was diagnosed in July of 2018, so my post-traumatic stress pretty much went unchecked for the better part of eight and a half years and it’s something that it took an unbelievable toll on me. I would say that the mental and emotional toll that my diagnosis took on me was far greater than the physical toll, and it took a pretty hefty physical toll from everything that I went through, but the mental health aspect I think is so important.

Rob Long:

I think being able to talk to somebody, to have a therapist or a professional that you can speak with about your condition, and to get help, I am able to sit here and talk about my story because I’ve been receiving help for coming up on two years now for my post-traumatic stress disorder. It’s something that I blocked out so much of everything that I went through, the people in my life at that time and it was a long road to get to where I am now where I’m able to comfortably discuss being diagnosed with brain cancer, and being diagnosed with post-traumatic stress disorder.

Rob Long:

It’s something that you can work to improve. It takes time, but making sure that you’re taking care of your mental health, I think it’s so important that that is addressed in order for you to be able to address your physical health. I think that the mental health piece of this needs to be addressed and to know that as hard as it is to understand is that you’re not alone. There’s so many people that are going through this. I went through it, I had unbelievable support, and I had teammates, and I had families, and friends that were there for me, and I still felt so alone, and so isolated until I started to meet other patients, and one of the things that for me I always identified as a brain cancer patient and then I started to learn about the journey of a rare disease patient and our stories were … there were so many parallels.

Rob Long:

While the diagnosis may be different, the journey to that point is so similar, going into a doctor’s office and not having a diagnosis right away, and not having a cure, and not really being able to ride reliable treatment options and to be told that there’s something that you can try, but we can’t promise you anything. And so, that experience is one that I identified with as a rare disease patient and one that has enabled me to have a better understanding of the needs of the rare disease community and frankly to do a better job at leading the Uplifting Athletes organization to support rare disease patients’ families and how we can best accomplish that.

Lisa Scimemi:

And the last question is, what are some of the activities that the Uplifting leaders athletes do in their chapters?

Rob Long:

So, it’s a great question. So, at the chapter level we have a couple of events. The two big ones that happen on campus each year are Lift for Life event, so this is basically an inter-team lifting competition that they use to raise money. Schools like Penn State and Illinois have opened Lift for Lifes that are open to the public. People can join, obviously that’s going to be a little bit different this year due to coronavirus, but Lift for Life is always a big event on campus where they try to raise awareness on campus.

Rob Long:

And then also, we have Touchdown Pledge Drive, which the teams raise money for every touchdown they score in the month of October. Additionally, we have unique events that happen at the University of Notre Dame, we have a bowling event each summer that we’ve held for the last seven years where rare disease patients in the South Bend community come and they bowl with the Notre Dame football team.

Rob Long:

We’ve done similar things with Davidson and so we’re trying to continue to build out the number of programs and opportunities that we have for on campus and with our chapters. The other thing that we do oftentimes is bring rare disease patients and families to games on campus, and have the opportunity to go a little behind the scenes and see the locker room and all those things for a game day experience.

Rob Long:

So, there’s a couple of different things that we try to do to engage the communities where our chapters are. So, I think that’s all that you have, but I just wanted to thank you again for having me, and if there’s any questions, please feel free to follow up with me. My email is pretty simple, it’s just rob@upliftingathletes.org, and we look forward to communicating with you guys at any point in the future, so thank you very much.

John:

Thank you, Rob, and thanks to all of you for joining Sanguine for this S3 webinar The Journey From Patient to Advocate to Leader: Changing the Clinical Research Game. For our list of upcoming webinars, visit researcher.sanguinebio.com. If you have a need for patient samples for your research, please visit sanguinebio.com.