Rob was just wrapping up his college career at Syracuse University and was on his way to fulfilling his dream of playing in the NFL when he discovered he had a large brain tumor. After surgery to remove the tumor, he was told he had grade three brain cancer, for which there was no cure. A year after his diagnosis, one of his team mates started the Syracuse chapter of the Uplifting Athletes organization, in Rob’s honor. Nine years on, Rob is Executive Director of the organization.
When I got my diagnosis, I was at a point in my life when I felt like I had a lot going for me. I didn’t think anything could steer me off the course of playing in the NFL. But five days after my last regular team game, having been sick on Thanksgiving morning, 2010, I could no longer ignore that there was something wrong. The girl I was dating at the time told me she’d stop talking to me if I didn’t go to see a doctor. So I went.
The MRI revealed a tumor that took up a quarter of my brain. I was flown home to Philadelphia for emergency surgery. I spent my 22nd birthday prepping for brain surgery. When I woke up from the operation I realized I’d forgotten what it was like to not have a headache. The removal of the tumor took a lot of pressure and pain away.
At a follow-up appointment, the doctor asked if we had a family history of brain cancer, which my Mom confirmed. The doctor told me mine was grade three and that there was no cure. I thought I was dying, and despite advice not to Google it, I discovered the five-year survival rate was only around 15%.
About a year after my diagnosis, one of my team mates asked if he could start the Syracuse chapter of Uplifting Athletes in my honor. I got very involved with public speaking and fund-raising for the organization. In 2016, I reached out to the founder, Scott Shirley, to ask if there was an opportunity for me to join the organization full time. Two and a half years later I was promoted to Executive Director.
We’ve been really excited about the growth the organization has seen in that time. We launched the Young Investigator Draft in 2018, and this year we’ll have surpassed $300,000 in research grants.
The main lessons I share are:
1. Being diagnosed with a life-threatening disease can actually put your life on a course to achieving hugely positive and rewarding things that you never imaged.
2. Researching illnesses and symptoms on the internet can be quite alarming and frigthening. Don't accept everything you read online because you never know what lies ahead. I'm still here, 9 years after being disagnosed with an incurable illness.
3. Many illnesses and diseases run in families, but just because you're at risk of inheriting an illness, it doesn't mean that you can't live an incredible life. I've achieved things I never dreamed of.
To learn more about Rob and his efforts, please visit www.upliftingathletes.org. You can also follow Rob on Twitter and Instagram at @RobLong47.