What is NF?

Neurofibromatosis (NF) causes painful tumors to grow uncontrollably on skin and nerve tissue. The tumors are often inoperable and can develop anytime and anywhere, including the brain, spinal cord, and eyes. The prognosis is unpredictable and extremely variable. People with NF struggle with pain, disfigurement, hearing loss and social isolation. 1 in 3,000 people has NF, but there is no cure and little treatment.

What is Neurofibromatosis Northeast (NF Northeast)?

NF Northeast is a 501(c)(3) that funds scientific research, provides critical health and wellness support to families, and lobbies for federal research funds. It is the only organization serving families across Massachusetts, New Hampshire, Vermont, Rhode Island, Maine, Connecticut & New York.

Our family's story:

Probably like you, we had not heard about NF until our daughter was diagnosed.  She now has tumors in her brain and eye, pain, poor muscle tone, learning disabilities, and social isolation. She understands the frightening possibilities NF creates. Can you imagine hearing your child say she is worried that her headache could be a malignant tumor? No child and no family should have to worry like that.   

The fundraiser:

On May 2nd, 150 guests will raise critical funds for NF Northeast while watching the Kentucky Derby at Wright-Locke Farm in Winchester, MA. This event includes dinner, horse wagering, a raffle and auction. With your help, we seek to raise $30,000 in our 5th year of hosting the fundraiser.

Your role:

Please consider making a donation that can be used in our raffle or silent auction. The money raised will help fund research and provide direct support to affected families. We will recognize your contribution in event materials, announcements and social media.