Anaplastic Astrocytoma diagnosis provided motivation for Syracuse football program to tackle rare diseases

RARE DISEASE SPOTLIGHT GRAPHICThere 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.

Patient Groups: American Brain Tumor Association, National Brain Tumor Society, American Cancer Society, Brain Tumor Foundation For Children.

Getting Social: Twitter: @theABTA, @NBTStweets, @AmericanCancer, Facebook: ABTA, braintumorfoundation, AmericanCancerSociety, BTFC.

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.

2 thoughts on “Anaplastic Astrocytoma diagnosis provided motivation for Syracuse football program to tackle rare diseases

  1. Hi Rob, What a story. I appreciate what you and the other athletes are doing to bring awareness to rare conditions. My story is not my own, but my 3 year old nephew’s. About 2 years ago he was diagnosed with a rare genetic disorder called Hunter Syndrome. It is a rare, regressive disorder that is part of a larger group of genetic disorders known as MPS. To see Ethan, other than his hearing aides, you might think he is a typical little boy. What you don’t see is the port in his chest that is the lifeline to an incredibly expensive enzyme that staves off the inevitable decline of his body systems that comes with this horrible disorder. In other words, the diagnosis is about as dire as it can get. He, like the other Hunter boys were born seemingly normal, but in the end, this disorder will rob these boys first of quality of life, and ultimately, of life, all before they reach around the age of 15. There are some potential fixes and cures on the horizon, but as of now, there is nothing that will allow the infused enzyme to cross the blood brain barrier. My brother, his wife, and their fellow MPS families are working desperately to bring awareness. As you know, when such a small number of people are imoacted, the funding for research and development is often limited. Any opportunity to bring this and other rare diseases to light is a valued opportunity. I truly appreciate your sharing your experience. Once you have the world of rare disease opened to you, you realize “rare” is a bigger word than you ever could have imagined. It is a team you never expect to join and probably did not know existed. PS Speaking of teams, our little Ethan is from a family of Penn Staters, but don’t hold that against him. His dad actually managed the women’s volleyball team. His mom and some grandparents that went there, and his uncle/godfather/my husband played football there.

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