May 13, 2021

Rare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long

40 minutes

ONCE UPON A GENE - EPISODE 082

Rob Long is the Executive Director at Uplifting Athletes and is a rare brain cancer survivor. His passion and drive for Uplifting Athletes makes him an inspirational hero and he fights relentlessly everyday so others don't have to face challenges in isolation.

EPISODE HIGHLIGHTS

Can you share your story about discovering a rare illness in college?

In my senior year at Syracuse University, I was focused on the NFL city I was going to end up in and I was one of the best football players in the country in the draft that year. Through my senior year, I wasn't feeling like myself. I had sensitivity to light, I was ill in the mornings and had headaches almost every day. I disregarded the symptoms until one morning I woke up really sick and saw a doctor. I got an MRI which revealed a large growth in my brain. I saw a specialist the next day and a few hours later was on a plane home to see a neurosurgeon.

How did your diagnosis leave you feeling?

I had never felt so alone and isolated, but at the same time, I knew my teammates and the football community were there to support me. There was nothing anything could say to provide comfort. I just wanted a doctor to tell me that I was going to be alright, and no doctor was able to tell me that. No matter how supportive my friends, family and teammates were, my time was finite and it was a challenging experience.

Where did you find support?

It was a journey. For so long, I tried to escape my reality through football. Despite my diagnosis and treatment protocol, I maintained the idea that I wanted to play football in the NFL and I wasn't going to let cancer determine when I was done playing or living my life. That attitude kept me going and I kept training and kept working out to stay healthy. I wanted to find a way to cure cancer through making it to the NFL and raising a lot of money. It wasn't until later that I discovered I was suffering from PTSD and mental health issues that stemmed from my diagnosis. When I connected with a mental health professional, I found ways to talk through what I experienced and get the help I needed and change my life for the better.

What is Uplifting Athletes?

Uplifting Athletes is a nonprofit organization and we work to serve the rare disease community to inspire hope through the power of sport. We developed a program to uniquely impact rare disease research through the Young Investigator Draft program. We draft, support, celebrate and fund the top rare disease researchers across the country to honor the work they're doing and fund rare disease research. Patient advocacy organizations nominate rare disease researchers to be recognized by Uplifting Athletes for the Young Investigator Draft.

LINKS & RESOURCES MENTIONED

Uplifting Athletes

https://www.upliftingathletes.org/

Young Investigator Draft

https://www.upliftingathletes.org/young-investigator-draft

Seattle Rare Disease Fair Virtual Conference (2021)

http://rarediseasefair.com/?p=164

CONNECT WITH EFFIE PARKS

Website

https://effieparks.com/

Twitter

https://twitter.com/OnceUponAGene