When I was a senior at Syracuse University, I was one of the best — if not the best — punters in the country. I had it all and my only unknown in the world was with which NFL team I would sign. But that was the year everything changed.
As I was completing my final season at Syracuse in 2010, I was diagnosed with a rare form of brain cancer for which there is no cure.
It’s been more than nine years since my diagnosis and my life has been a miracle. I was able to turn 30. I was able to get married. And I am now the executive director of Uplifting Athletes, an organization that was built to leverage the platform of the athletic community to lift up the rare disease community.
Strength in numbers
Dealing with any disease is frightening and this is especially true for someone diagnosed with a rare disease, because for so many there are no answers. That can leave patients and their caregivers feeling isolated and lonely.
I decided that I wanted to share my story so other families dealing with rare diseases know that no matter what life throws at you, you are not alone, and you 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 the key is that you try to move forward.
At Uplifting Athletes, that is exactly what I do every single day.
Founded in 2007, Uplifting Athletes fulfills its mission to inspire the Rare Disease Community with hope through the power of sport, leveraging a powerful network of more than 20 college football student-athlete-led chapters, Uplifting Ambassadors, and Team UA participants.
Making a difference
Since its inception, Uplifting Athletes has raised more than $5 million to support its mission and its charitable programs through a variety of annual activities. One of our most notable activities is the Uplifting Athletes Young Investigator Draft presented by CSL Behring. The Young Investigator Draft is the result of Uplifting Athletes’ ongoing commitment to cultivating resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers.
It is through the Young Investigator Draft and the grants we distribute that we fund collaborative and translational rare disease research. We hope that through this initiative we are able to work toward finding treatments and potential cures for the entire rare disease community.
The Young Investigator Draft stage provides a platform to celebrate these scientists and the importance of their research, as well as the impact it has on the rare disease community. This allows them to continue this important work that will help those who need it most — the rare disease patients.
Promotion leading up to, during, and following our first two Young Investigator Drafts reached more than 3 million people on social media and we are looking for an even bigger impact from the 2020 event.
Our hope is that we can bring a bigger group of sports fans together from around the world in 2020 to tackle rare diseases as a community of hope. Keep your eyes peeled for #WeTackleRare to help us expand our fan base and join us at the 2020YID on March 7.
To learn more about us and our programs, visit upliftingatheltes.org.
