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Graduate student, Neurofibromatosis team host fundraiser

By Svenja van den Woldenberg, Staff Writer

HERALD COMMUNITY NEWSPAPERS—Graduate student Krissy Diaz, 23, and the Neurofibromatosis (NF) Endurance Team are holding a car wash fundraiser from 10:30 a.m. to 4 p.m. on April 30 outside of the T-Mobile store, 590 Hempstead Turnpike in West Hempstead. The rain date for the car wash is Sunday, May 8.

Diaz, a creative art therapy major at Hofstra, has been part of the NF Endurance Team—the fundraising arm for the Children's Tumor Foundation—for several years, volunteering as team captain for the Long Island Marathon.

"The manager of the T-Mobile store in West Hempstead has a big heart and is allowing [us] to use his lot free of charge," said Diaz. "The hose and water usage will be included. The only thing he requires is to bring smiling faces and even music for a fun day of car washing and raising [money] for the Children's Tumor Foundation."

The money will go directly to the NF Endurance Team for the Long Island Marathon being held Saturday, May 1 to Sunday, May 2. Diaz raised over $8,000 this year and said she hopes to reach $10,000. Car washes will be offered at $5 per car.

Donations are also accepted online at http://www.active.com/donate/nfli2011/hope. To donate directly to the Children's Tumor Foundation, visit NFEndurance.org and click "donate."  Bracelets will also be available for $5 at the car wash.

"This is also a personal cause for me," said Diaz who has been fighting against Bilateral Acoustic NF, or NF2, since she was diagnosed at age 8. The CTF website says that NF2 is a rare genetic disorder characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both auditory nerves are the most common indication of NF2, along with hearing loss beginning in the teens or early twenties.

"My mother noticed skin marks that resemble mosquito bites the color of skin. My pediatrician thought nothing of it, but my mom wasn't satisfied," Diaz said. She said that her mother scheduled a biopsy for her and the results led doctors to diagnose Diaz with NF1. A few days later, her mother received a phone call telling her that the first diagnosis was a mistake and that Diaz actually had NF2.

Diaz said she has had eight surgeries due to NF: four brain surgeries (one stopping a tumor from crushing her brainstem) and four other body surgeries. She also lost her hearing at age 18, just as she was graduating high school.

Diaz is currently enrolled as a graduate student at Hofstra with a major in creative art therapy. "I love it and I finally feel like I'm on the right path," said Diaz. "I want to help others give back. I may even go as high as to get my Ph.D. in art therapy."

Diaz is the only person in her family with NF but she said that her parents, John and Maria, and her brother, John, 25, show all the support and care for her that they can. Her family and friends have joined her in signing up to run the Long Island Marathon.

"I like to keep the thought that you never know what dollar the cure will be found with," said Diaz.

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