My college football career at Syracuse University was almost over in late 2010. We had just one bowl game to play, and I knew I was a top NFL prospect. I was already thinking about which city I would end up in. Maybe, I imagined, I could even land in my native Philadelphia.
All that changed on Dec. 2, 2010, the day I learned I had a large growth in my brain. Eighteen days later, I learned it was a rare form of brain cancer, for which there is no cure. I was 22.
Today, I'm among the 15 percent who lives at least five years after diagnosis with grade III anaplastic astrocytoma. As I tell others in the rare disease community, "I really shouldn't be here."
As an executive at Uplifting Athletes, a nonprofit devoted to applying the power of sport to inspire those with rare diseases, I try to live my life to honor my incredible fortune. It's certainly not easy living with the knowledge that my cancer may not remain dormant, but I accept the challenge and understand that each day I am blessed just to be here.
Over the past eight years, I also have come to understand fully how fortunate I was to be gifted with unbelievable family, friends, medical care. and a support system that wouldn't allow me to fail.
Naturally, I drew strength from my family — especially my mother, who has seen so many of her loved ones face cancer. Her own father and youngest sister died of brain cancer. To see her deal with so much adversity and sorrow in her family, but wake up every day with a positive attitude, is a testament to her spirit.
My Syracuse University community consistently reached out during some of my toughest days.
When I arrived home following treatments, there would be letters offering support and sharing personal stories of experiences with cancer. Going through a rare disease can make you feel so isolated. Yet I never was alone.
All that inspiration and support led me to share my story with other families dealing with cancer, to be sure they know it is always an option to get up and move forward.
Since August 2016, I have been given a platform that allows me to have more impact than I could have ever imagined.
Uplifting Athletes was founded in 2007 and currently has 22 chapters led by college football student athletes, including almost half the schools in the Big Ten and ACC conferences. Part of our vision is to support medical researchers seeking treatments.
We have four programs, Uplifting Leaders, Uplifting Experiences, Rare Disease Awareness, and Rare Disease Research. All our programs are mission driven, but the impact of dollars for research has the biggest potential to be a game changer.
With that in mind, Uplifting Athletes now is using the research dollars we raise to fund individual researchers through our Young Investigator Draft, presented by CSL Behring.
This Saturday evening at Lincoln Financial Field, Uplifting Athletes will bring rare disease patients and caregivers, industry, doctors, scientists, and patient advocates together to celebrate awarding $60,000 in research grants.
Five Young Investigators and a mentor will each receive a $10,000 grant to pursue five different areas of research: rare cancers, rare autoimmune and immunological disorders, rare blood disorders, rare genetic disorders, and rare muscular and neurological disorders. The grants are intended to encourage collaborative and translational research that will benefit the entire rare disease community.
Bringing together so many different aspects of the rare disease community under one roof — and at the home of my favorite NFL team, the Super Bowl Champion Philadelphia Eagles — fires me up, just as my own athletic career did. These are passionate people, like me, each fueled by the desire to help and serve others.
Rob Long, director of Rare Disease Engagement at Uplifting Athletes, lives in South Philadelphia. He may be contacted at firstname.lastname@example.org, or follow him on Twitter: @roblong47. To donate to his group, or buy tickets for the Saturday event, go to http://give.upliftingathletes.org/yid2018. This guest column appears through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for more than a million patients and caregivers.