There are more than 7,000 different 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: Anaplastic Astrocytoma
Brief Description: Anaplastic astrocytoma is a rare malignant brain tumor. Astrocytomas are tumors that develop from certain star-shaped brain cells called astrocytes. Astrocytes and similar cells form tissue that surrounds and protects other nerve cells found within the brain and spinal cord. Astrocytomas are classified according to a grading system developed by the World Health Organization (WHO). Astrocytomas come in four grades based upon how fast the cells are reproducing and that likelihood that they will spread. The exact cause is unknown, and it tends to affect adults more than children and males over females.
Rare Connection: Former Syracuse punter Rob Long was diagnosed with Grade III Anaplastic Astrocytoma 5 after days the final game of his senior season. Bound for the NFL as one of the best punters in the college football, Long was suddenly in a fight for his life. The standard prognosis for a Grade III diagnosis like Rob’s is an expected life span of 3-5 years. The harrowing news did not deter Rob. It motivated him to literally fight for his life. That fight served as an inspiration to many in Rob’s circle of life – including his teammates at Syracuse. Using Rob as an inspiration, several members of the Orange football team, led by Sam Rodgers, put in the hard work and time to form an Uplifting Athletes Chapter on campus to inspire their teammate with hope and let him know they were doing everything they could to support him. Although, the long and winding battle to become cancer free cost Rob his NFL career opportunity, it opened another door that allows him to fulfill his passion – helping and serving others in the rare disease community. Rob is a former rare disease patient, a rare disease survivor and works daily to help strengthen the bond between college football and the rare disease community as the Director of Strategic Development for Uplifting Athletes.
Learn More: There is currently one FDA approved treatment for Anaplastic Astrocytoma. However, there currently is no cure. For more information, 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.