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Lewiston mom looks to raise awareness of her son's disease

By Scott Scanlon – Refresh Editor

Lukas Napier, 19, of Lewiston, has had neurofibromatosis since he was a child but the tumors that now riddle parts of his body didn’t start showing up in force until about two years ago.

On the bright side, as he tackles the genetic disease that affects cell growth in the nervous system, he has a team of people on his side: his mom, and the medical staff at Womens and Children’s Hospital.

Those folks will gather Saturday for a Hope for the Care & Research of Neurofibromatosis fundraiser to support continuing research at the hospital.

The fundraiser starts at 6 p.m. in Elk Lodge Post 346, 1805 Fashion Blvd., Niagara Falls. The cost is $25 per person and $40 per couple, and includes a buffet dinner and live entertainment.

You may order tickets by Wednesday through Charlotte Napier by calling 830-8521.

“We’ve been very fortunate up until Lukas was 17,” Charlotte said of her son, a graduate of Lewiston-Porter High School.

Now, doctors are helping Lukas deal with eight tumors in his head and more than 100 in his spine, his mother said. Most tumors involved in the condition are benign but do hold the prospect of becoming cancerous, and in some cases can be extremely difficult to control, she said.

“Some people may not know they have the disorder and be free from symptoms,” Dr. Arie Weinstock, a professor of clinical neurology at University at Buffalo School of Medicine and medical director of the Neurology Division at Women and Children’s. “Others will have a range of disability.”

There are three forms of the condition. The most common, Neurofibromatosis Type 1, affects about 1 in 3,000 people and is more common than many realize.

“Roughly half of all cases arise in families with no history of the disorder,” Weinstock said in an email. “The severity of symptoms can range from having several café au lait skin markings and be symptom free, to severe disability,” the doctor said, and can cause learning disabilities, disfigurement, blindness, headaches, seizures, hearing loss and “excruciating, disabling neuropathic pain.”

Weinstock will be among the speakers during Saturday’s fundraiser, and said money raised will go toward Women and Children’s efforts to help set international treatment standards for patients with what often is called “NF."

Those unable to attend the dinner who would like to support the cause can mail out a check made out to WCHOB – with Hope for NF in the memo line – to Dr. Arie Weinstock, Women and Children’s Hospital of Buffalo, 219 Bryant St., Buffalo NY 14222.

Meanwhile, Charlotte Napier will continue to look to raise awareness of NF one blue and green ribbon at a time.

“We’ve been dealt this hand for a reason,” she said, “and I think it’s to bring awareness of this disease on behalf of people who have it and don’t have a voice.”


Twitter: @BNrefresh

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About The Refresh Buffalo Blog

Scott Scanlon

Scott Scanlon

Scott Scanlon is an award-winning reporter and editor who has covered various topics in his quarter-century as a journalist in South Florida, Syracuse and Buffalo. He is aiming to pass along what he is learning these days about health, fitness, nutrition and family life.

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