There are more than 7,000 rare diseases but we are one rare disease community. Regularly, Uplifting Athletes will put one rare disease center stage to give that disease and its community a chance to shine.
Rare Disease: Neuroblastoma
Brief Description: A childhood or pediatric form of cancer that occurs in the abdomen near the adrenal glands, but it can also occur in other parts of the body. It is often present at birth but may not be detected until later in infancy or childhood. The symptoms of a neuroblastoma may include a lump in the abdomen, pain, diarrhea, or generally feeling unwell. It affects one out of 100,000 children. The exact cause of this tumor is not yet known. Treatment may involve surgery, chemotherapy, radiation therapy and stem cell transplant, and it can be cured when diagnosed at an early stage.
Rare Connection: Former Penn State All-American and Big Ten Defensive Player of the Year Devon Still was battling through his own injury issues to keep his NFL career alive when his then 4-year-old daughter, Leah, was diagnosed with the rare disease neuroblastoma. Leah’s diagnosis made playing football irrelevant to Still. At that moment, he was prepared to walk away from the game to be with his daughter full-time, but realized keeping his health insurance was best for her. With the support of the Cincinnati Bengals, Still decided to use his platform as an NFL player to shine a spotlight on pediatric cancer. Devon used social media to document Leah’s battle with neuroblastoma, quickly raised more than $1 million for research through jersey sales, and the inspiring duo was awarded the Jimmy V Award at the 2015 ESPYs. As a member of the Penn State Chapter during his Nittany Lions career, Still reached out to Uplifting Athletes Executive Director Scott Shirley shortly after Leah’s diagnosis. Scott was a source of support and together they launched a Pledge It campaign to raise funds for research. Leah has been in remission for three years, and after stops in Houston and New York, Still retired from the NFL after the 2017 season. Leah is healthy today, but Devon is far from done using his platform to help others. Since retiring, he launched the Still Strong Foundation to help families with children fighting pediatric cancers and to share his story and hopefully motivate others to fight through their challenges. In Devon’s words he wants to “have an impact that goes well beyond the football field.”
Learn More: There are two FDA approved treatments for neuroblastoma, Adreview and Unituxin, and more than 500 clinical trials. To learn more about clinical trials go here. Some of the most well-respected resources inside the rare disease community include National Institute of Health (NIH), National Organization for Rare Disorders (NORD) and Global Genes.