Yorktown mom leading Westchester’s first NF walk

YORKTOWN HEIGHTS, N.Y.—A Yorktown Heights mother is bringing her advocacy work to the local community next month, coordinating a fundraising walk to support those affected by neurofibromatosis (NF).

Allison Gilliam D’Ottavio, a Yorktown resident of 15 years, serves as a patient outreach coordinator for NF Northeast, a nonprofit based outside Boston that provides resources, research funding, and advocacy for individuals and families affected by NF.

According to the National Institute of Neurological Disorders and Stroke, NF is a group of genetic disorders that cause tumors to develop on nerves throughout the body, including the brain and spinal cord. The condition includes the most common, NF1 (also known as von Recklinghausen disease) and all forms of schwannomatosis (SWN), with NF2-related schwannomatosis (NF2-SWN).

There is “no cure,” D’Ottavio said. Her involvement with NF Northeast began as a volunteer after her daughter was diagnosed with Type 1 NF as a baby.

Now 8 years old, her daughter continues to inspire her advocacy efforts.

The Steps2CureNF walks are the organization’s biggest fundraising events, D’Ottavio said. She’s excited that the one scheduled for Sunday, May 4, will be the first in Westchester. The goal is to “draw attention to the cause and to spread awareness and to create community for neurofibromatosis patients and their families,” she told Yorktown News.

The nearest walk to Westchester is in Ridgefield, New Jersey, so bringing one to her town at FDR Park means a lot to her.

“When I joined the team and was told let’s coordinate a walk in Westchester County, my first thought was let’s do it right here in Yorktown Heights,” D’Ottavio said.

The 1.5-mile walk will begin at 10 a.m. on May 4 at FDR Park (2957 Crompond Rd.). Check-in and registration will start at 9 a.m., with additional activities planned throughout the event. Proceeds will benefit NF Northeast and support its mission to provide hope and assistance to those living with NF and related disorders.

“It’s just such a passion of mine,” D’Ottavio said. “From going from not ever having heard of this disease, and not even ever having heard the word ‘neurofibromatosis,’ to now being not only my work, but a passion of mine and my family to drive awareness—that’s just so hard to put into words.”

She hopes that, in her lifetime, the word “neurofibromatosis” will be widely recognized.

“Sometimes I call it the most common rare disease that you never heard of,” D’Ottavio explained. “It does affect quite a lot of people.”

The walk holds deep personal meaning for D’Ottavio, who sees it as an opportunity to bring her community together in support of both the cause and her daughter.

“I think about having it right here in my hometown—inviting family, friends, members of the community, people that we know through school, people that we know through work,” she said. “That is so emotional to think about them coming together to not only support the cause and NF in general, but also supporting my little girl. It’s just such a profound thing.”

For more information or to participate in the event, visit secure.qgiv.com/event/steps2curenf-westchestercountyny2025.