Rob Long was just starting his senior year at Syracuse University when he was diagnosed with cancer. The pre-season All-American punter for the SU football team was looking forward to ending his college career by showing what he could do on the field. It is what happened off the field that set Rob on a journey he didn’t expect. Now the Director of Rare Disease Engagement for Uplifting Athletes, he shares his story with us.
PRA Health Sciences is a proud sponsor of the inaugural Young Investigator Draft in Philadelphia at the Eagles Stadium on August 18. Uplifting Athletes is providing a $50,000 grant. Five young rare disease investigators will receive $10,000 each to support their research efforts in five different rare disease specialty areas.
Getting a cancer diagnosis can be scary—what helped you get through it?
It’s really a terrifying moment at 22 to be told that you have brain cancer and there is no cure. I drew so much strength from family and close friends. I wanted to get better because I did not want to cause my parents any pain. Especially my mom who has been through so much with the loss of both of her parents, her oldest brother, oldest sister and then her youngest sister in 2016.
My Aunt Chrissie and I were diagnosed the same day on December 2nd in 2010 when they found my brain tumor and she was diagnosed with breast cancer. We both started getting healthy and then Aunt Chrissie was diagnosed with a primary brain tumor in 2015 and passed away less than 12 months later in 2016.
I drew strength from my family. Seeing my mother deal with so much adversity but wake up every day with a positive attitude when she had every right to be miserable was unbelievable to see and a testament to her spirit.
I have also been incredibly fortunate to have an unbelievable support network from the Syracuse community who would send me letters almost daily. Every day I came home from treatments there would be letters in the mail offering support and sharing personal stories of their battles and experiences with cancer. It was nice to know that going through a disease that can make you feel so isolated and lonely I wasn’t alone. That is what led me to be vocal about my battle, to let people know that they are not alone going through this tough time.
Cancer is personal for you; why is it important for you to share your story and work with other cancer patients and their families?
I was so fortunate to be gifted with this support system that really wouldn’t allow me to fail. I decided that I wanted to share my story so that other families dealing with cancer know that no matter what life throws at you, you always have the option to get up and keep moving forward. It’s not always easy or simple to figure out what to do, or what the next step to take is but as long as you try to move forward that is what matters.
What message do you try to give cancer patients?
You are not alone in your battle or the emotions that you experience in that battle. Cancer is tough and takes its toll emotionally and physically. As tough as the fight is you will be that much stronger when you come out on the other side. One of my favorite mantra’s is a quote by an Indian Poet, Rabindranath Tagore. “Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.” I always viewed that the more “bad” that life throws at you the more powerful and amazing it makes you as a person. The sunsets with clouds really are the most beautiful and have the most color. So much of what you experience is perception. Are you going to let the clouds be rain clouds or add color to your sunset?
Tell us about Uplifting Athletes—what is the organization’s mission?
Uplifting Athletes is a nonprofit organization whose mission is to inspire the rare disease community with hope through the power of sport.
How did it get started?
The origins of Uplifting Athletes goes back to 2003 when our founder Scott Shirley’s father was diagnosed with kidney cancer. Scott was on the Penn State football team and wanted to use his platform to make a difference. Scott and his teammates decided to have an inter squad weightlifting competition that was called Lift for Life. The team raised $10,000 and the money was used to support the research that eventually led to the treatment of kidney cancer with which Scott’s dad had been diagnosed.
Still to this day, the Lift for Life event is one of the primary fundraising events at the chapter level. Unfortunately, the treatment came to market just one month after Scott’s dad had passed. But this inspired Scott to move forward and use the platform that student athletes have as a voice for the rare disease community. In 2007, Uplifting Athletes became an official non-profit organization.
What are some of the service programs you support?
Uplifting Athletes has four clearly defined strategic priorities which are Uplifting Leaders, Uplifting Experiences, Rare Disease Awareness and Rare Disease Research.
- Uplifting Leaders is the development of the student-athletes that run the various chapters of Uplifting Athletes at their respective schools. We focus on the total development of the student-athlete by providing them an internship like experience when they do not have time for traditional internships.
- Uplifting Experiences is the initiative to engage the rare disease patients in the communities of our chapters with the student athletes to provide unique and uplifting experiences to the rare disease patients. This also serves to allow the student-athletes to understand and meet the people they are impacting.
- Rare Disease Awareness comes through in pretty much everything that we do as an organization. However, we have a few programs that are dedicated to raising awareness. Every year for the last 10 years we have been honoring a player or coach in college football who has had a lasting impact on the rare disease community and that honor is called the Rare Disease Champion Trophy. Additionally, we participate in the NFL’s My Cause, My Cleats Program where NFL Players wear Uplifting Athletes inspired cleats during a week of the NFL season. We also run a campaign called “Reps for Rare Diseases” where future NFL pros donate their bench press reps at the NFL combine or Pro Day to raise money and awareness for every rep of 225lbs that they do on the bench press. Last year we had over 40 players participate and raised over $40,000 for Uplifting Athletes.
- Rare Disease Research will manifest itself through this year’s inaugural Young Investigator Draft. We will be funding $50,000 in grants to five young investigators in the rare disease space who are doing collaborative and translational research. Each researcher will receive a $10,000 grant and represent one of five areas of rare diseases. We have established the five areas in an effort to encompass the rare disease community as a whole. The five areas are rare muscular and neurological disorders, rare autoimmune and immunocological disorders, rare blood disorders, rare cancers, and rare genetic disorders. The goal of the event is to inspire the rare disease community by funding the next generation of rare disease researchers!
How do the athletes get involved in this effort?
Athletes can join TeamUA and support Uplifting Athletes by setting up a campaign for whatever sport or team they play for at www.pledgeit.org. If you happen to be a college football student athlete and would like to start a chapter you can reach out to me at firstname.lastname@example.org.
How can someone get involved with Uplifting Athletes?
How Do Patients Get a Seat at the Drug Development Table?
RARE DISEASES NEWSLETTER Volume 10, July 2018
This quarterly publication will keep you up to date on PRA’s Rare Disease Team focus, achievements, and new initiatives.