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Can You Help: 'Hope for the Care and Research of Neurofibromatosis'

by jmaloni
Sat, May 10th 2014 09:20 am

The Napier family of Lewiston is hosting a fundraiser, "Hope for the Care and Research of Neurofibromatosis," starting at 6 p.m., Sunday, May 17, at Elks Lodge No. 346, 1805 Fashion Blvd., Niagara Falls. Proceeds will benefit Women and Children's Hospital of Buffalo in its ongoing research.

Charlotte Napier said, "We've been dealing with this with a family member for 16 years. It's been an ongoing struggle."

She said her son, one of many individuals being treated for neurofibromatosis, continues to undergo treatment at Women and Children's Hospital.

Described as a common, yet under-recognized genetic disorder of the nervous system, neurofibromatosis mainly affects how nerve cells form and grow and can result in the growth of tumors on nerves throughout the body. Having three distinct forms - NF1, NF2 and Schwannomatosis - it can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities and excruciating and disabling pain. NF occurs in one in 3,000 individuals and affects a million worldwide.

Locally, Women and Children's Hospital's medical professionals continue to shed light on this disorder. But the battle for a cure remains far from over. "Progress toward ending NF is being made every day," said Donna Walentynowicz of Women and Children's Hospital. "There are many NF specific clinical trials and many medical treatments in drug development, but more support is needed locally and nationally."

Already this benefit has enlisted a number of sponsors, including DiMino Lewiston Tops, Lower Niagara Moose Lodge No. 584, A-1 Landcare Inc., Michael J. Dowd, Tonawanda Environmental Corps, Brian Aaker and Judith Napier, Dorothy Napier, Joan and Kim Quarantillo and Lewiston-Porter High School.

Charlotte Napier invites area residents to attend the May 17 fundraiser and help contribute towards the NF research. Tickets are priced at $25 per person and $40 per couple. Included will be a buffet dinner, live music by Whatthefolk, a basket raffle, 50/50 drawing and a live auction.

For tickets or additional information, contact Charlotte Napier at 716-830-8521 or Crystal Avery at 716-531-5175.

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