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Understanding neurofibromatosis, the disease Nick Gilbert battled

Nick Gilbert, the son of Cavaliers owner, Dan Gilbert, fought the genetic disorder most of his young life. He passed away Saturday in Detroit.

CLEVELAND — At age 14, he became the Cavaliers' NBA Draft Lottery lucky charm. Nick Gilbert and his signature bow tie, a symbol of courage and strength, which is something he and others battling neurofibromatosis show daily.

Gilbert died Saturday after a year of multiple surgeries to deal with the tumors caused by the genetic disorder that typically runs generationally in families.

“It's not a disease that we have any type of overall solution. There's no cure for it, most of the problems that arise from the disease are related to the tumors that develop,” said neuro-oncologist, Herbert Newton, M.D., the medical director of the Brain Tumor Center at University Hospitals Seidman Cancer Center. 

Dr. Newton also just started the Adult Neurofibromatosis Center at UH.

Neurofibromatosis, or NF, has three types, but NF1 is the most common and is what Gilbert had. The disorder affects both sexes equally, has no racial, geographic, or ethnic link, so it can happen in any family. 

While it’s typically passed down, Dr. Newton says it can also show up out of the blue.

The disorder causes benign tumors to grow on nerves throughout the body, including brain, spinal cord and under the skin. It occurs once in every 3,000 births, so it's not uncommon, but how it manifests is unique to the individual.

“If you have someone with a very mild version of the disease and they don't have any internal tumors or don't have any tumors that become malignant, they can live a normal lifespan,” Dr. Newton said.

We don't know the severity of Gilbert's tumors, except that he underwent brain surgery a few years ago and a tumor on his optic nerve left him blind.  

What we do know is he left a mark on the city of Cleveland and brought worldwide attention to a disorder that desperately needs medical solutions.

The month of May is Neurofibromatosis Awareness Month, and the Cavs bow tie campaign this past season raised thousands for the non-profit organization, NF Forward. It’s a 501c3 that the Gilbert family founded to fund research to end NF.  

The Cavs suggested donations be made to nfforwardDetroit.org/donate in honor of Nick's memory.

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