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Staten Island Resident to Run, Bike, and Swim in Honor of Young Woman with Rare Disorder


This Sunday, Tony DeMott of Staten Island will, in his own words, “step out of his comfort zone” and compete in the New York City Triathlon, swimming a mile in the Hudson River, biking 24 miles from Manhattan to the Bronx and back, and running 6.2 miles in Central Park. He is doing all this to fight a disease called neurofibromatosis (NF), particularly on behalf of Krissy Diaz, a 24-year-old who lives with NF and inspires Tony in this mission.

DeMott is one of 15 athletes who, as members of the NF Endurance Team, will be competing in the 14th annual Aquaphor New York City Triathlon this weekend in order to raise funds for the Children’s Tumor Foundation (CTF), a nonprofit whose mission is to end neurofibromatosis through research. NF is a genetic disorder that causes tumors to grow on nerves throughout the body and affects one in every 3,000 people. Currently there is no cure or effective treatment for NF.

Krissy Diaz, who lives with a form of neurofibromatosis called NF2, was diagnosed at age eight. Before her 16th birthday, she’d had five surgeries to remove tumors from her body. Three of those operations were performed on acoustic neurofibromas in her brain that were affecting her hearing. By the time she left for college, she was deaf. However, Krissy earned her college degree and, inspired by her experiences with NF and her desire to help others, went on to obtain a master’s degree in Creative Arts Therapy. Krissy is also an avid runner and will be at the race on Sunday to cheer for Tony from the sidelines.

“Neurofibromatosis takes things away from you,” said Krissy, “but it also adds to your life in amazing ways, like my friendship with Tony and the support of the NF Endurance team, both of which fill me with gratitude.”

Please click here to listen to interviews with Tony DeMott on the radio station 1010 WINS.

About the NF Endurance Team
The Children’s Tumor Foundation NF Endurance Team is a national program in which participants run, bike, and swim in events across the country to raise NF awareness and funds for research. In 2012, the NF Endurance Team had over 700 participants in races across the country, raising $1 million. NF Endurance athletes range from first-time 5K participants to Ironman competitors, and the Team recently initiated a Kids Run program to involve children in fitness and fundraising for the cause. To learn more, please visit

About Children’s Tumor Foundation
The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. NF affects one in every 3,000 people, more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research into neurofibromatosis. In addition to benefiting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community. For more information, please visit

Simon Vukelj
Director of Communications
Children’s Tumor Foundation