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: Retinoblastoma
Brief Description: Retinoblastoma is an extremely rare malignant tumor that develops in the nerve-rich layers that line the back of the eyes (retina). The retina is a thin layer of nerve cells that senses light and converts it into nerve signals, which are then relayed to the brain through the optic nerve. Retinoblastoma is most commonly diagnosed in children under the age of three. Though most children survive this cancer, they may lose their vision in the affected eye or eyes or need to have the eye or eyes removed. The treatment of retinoblastoma is directed first toward preserving life and then preserving vision in the affected eye or eyes. Treatment is highly personalized, which means one affected individual may receive significantly different treatment than another individual.
Rare Connection: USC long snapper Jake Olson was the 2016 Uplifting Athletes Rare Disease Champion. Olson was born with retinoblastoma, a cancer of the eyes. He lost his left eye when he was 10 months old and despite numerous procedures on his right eye, he lost his sight completely to this rare disease in 2009 when he was 12 years old. A huge Trojans fan all his life, Olson tried to watch as much USC football as possible before losing his sight in 2009. When former USC coach Pete Carroll learned of Olson’s story he invited him to practices. Carroll took it a step further when he made Jake an honorary member of the team. The loss of his sight never slowed Olson down as he continued to flourish on so many levels. During his final two years of high school, Olson was the varsity long snapper for the football team at Orange Lutheran and also played on the varsity golf team. And in 2015 he earned a roster spot on the team he grew up loving, the USC Trojans. This past season, Olson made his first appearance in a game for USC when he snapped for an extra point against Western Michigan. In addition to being a student-athlete at USC, Olson is a published author and dynamic public speaker.
Learn More: There are currently four FDA approved drug for retinoblastoma, Clafen, Cyclophosphamide, Cytoxan and Neosar. For more information about clinical trials, go here. Some of the most well respected resources inside the rare disease community include National Institute of Health (NIH) and National Organization for Rare Diseases (NORD). A strong patient community to help makes a difference exists through Global Genes.