Former Syracuse University punter Rob Long discussed his battle with brain cancer, which began 12 years ago, and how his own treatment journey parallels his work with the non-profit Uplifting Athletes.
Rob Long
Director of Rare Disease Engagement, Uplifting Athletes
“There are over 10,000 rare diseases, and 95% of those rare diseases that do not have an FDA-approved treatment. There’s not nearly enough work happening in the pipeline to really change those figures.”
What were some of the biggest challenges that came with your diagnosis?
Aside from the diagnosis itself, the timing was the biggest challenge. I had just finished my senior year at Syracuse University, I was playing football there as one of the top punters in the country and slated to be drafted in the NFL a few months later. Five days after my last regular season game, I got an MRI from the team doctor, and they told me that I had a large growth in my brain. I was sent to a neurosurgeon in Syracuse who told me I had a tumor that took up a quarter of my brain.
I was flown home later that day to Philadelphia to be with family. About a week later, I met with doctors at Jefferson University Hospital. I spent my 22nd birthday in the hospital being prepped for brain surgery. I had brain surgery a week later. Six days later, I received the pathology report and my diagnosis of a grade-three anaplastic astrocytoma.
At the time of my diagnosis, the five-year survival rate of my cancer was 15%. The doctors told my parents that I would likely not live for more than another 36 months or so — that was 12 years ago.
How did your family support you through that difficult time?
Their support was everything. I had an incredible network of support: family, friends, people from Syracuse, and from my local community in Downingtown where I’m from. It was amazing. I felt that I was incredibly fortunate to come home every day and have letters in the mailbox waiting for me when I got home wishing me well.
I kind of realized that because I played sports and that my story ended up on ESPN, I was afforded this platform. So, it was important for me to share my journey because I wanted people to know they weren’t alone.
The same day they found my brain tumor, my mom’s youngest sister was diagnosed with breast cancer. It was a tough day in our family. Unfortuantely, in 2015, she was also diagnosed with a primary brain tumor and passed away in less than 12 months. Though I was doing well, her diagnosis was a stark reminder of how far we still have to go with research and finding treatments for people.
How did you get involved with Uplifting Athletes?
My teammates at Syracuse started the Syracuse chapter of Uplifiting Athletes in my honor a little over 18 months after my diagnosis, and to this day it’s one of the coolest things I’ve been a part of. I reached out to the founder of the organization, Scott Shirley, and asked if there was a way I could get involved with the organization at a deeper level. Fortunately for me, there was!
In September of 2016, I joined the organization full time, and in October 2018, I was promoted to the executive director role. It’s really a blessing to be able to work every day to pay for the good fortune that I have had, and to hopefully provide those opportunities for other people in the rare disease community.
Something that really hit home for me happened a few months ago, before our most recent Young Investigator Draft. I did some digging and looked into the origin story for the chemotherapy that I took. I learned that temozolomide, the first FDA-approved chemotherapy to penetrate the blood-brain barrier, was first synthesized in a small lab in Birmingham, England, in April 1980. It was synthesized by a doctor named Dr. Malcolm Stevens, who was working in a small lab with few resources, and they were able to move that project forward because they received funding from a small charity that had donated money to support his work. Almost 30 years later, I had the ability and access to take that chemotherapy because of a charity that was willing to invest in an up-and-coming researcher. It was a little surreal for me to learn.
There are over 10,000 rare diseases, and 95% of those rare diseases that do not have an FDA-approved treatment. There’s not nearly enough work happening in the pipeline to really change those figures.
When we developed this Young Investigator Draft in 2018, the idea was that we were going to plant as many seeds in the rare disease community as possible, by providing the seed grants for researchers to pursue their work. Through the Young Investigator Draft, we’ve been able to partner with 33 different disease-specific patient advocacy organizations and fund more than 44 different researchers, just like Dr. Malcolm Stevens. For me, it is so real that the work I’m doing is so parallel to my own journey.
What advice would you give to somebody who has just gotten diagnosed and is looking for resources, and how can people get involved?
Explore your options and be your own advocate. Put in the effort to make sure you’re getting the best care — second opinions are some of the most important things in medicine. Use your doctor appointments like they’re business meetings and bring a notebook to take notes.
In terms of getting involved: take action. There are a lot of great organizations that can help develop advocates and activate local legislators to enact things that are beneficial for everybody in the community. The most important thing is to get the ball rolling.