Neurofibromatosis Northeast

Neurofibromatosis Northeast is a Burlington nonprofit that supports people affected by neurofibromatosis, a genetic disorder of the nervous system that can cause tumors to develop along nerves, along with related conditions such as NF2-related schwannomatosis. It gives newly diagnosed patients and their families education, patient advocacy, financial resource guidance and community support, and it funds research. Its mission is to bring hope to those affected, and it is known as the organization with the heart.

The group grew out of one family’s experience. Karen and Bert Peluso welcomed a five-year-old girl from Korea, Mia, whose café-au-lait spots led to an NF diagnosis and later major surgery at Massachusetts General Hospital. Facing the condition head-on, the Pelusos raised money through road races and bake sales, connected with other families, and led the Massachusetts chapter of the National Neurofibromatosis Foundation in the years before NF Northeast was incorporated.

What to Know

• It was incorporated as a 501(c)(3) nonprofit in 1988.
• It has awarded more than $3 million in research grants and helped generate over $600 million in federally funded NF research through advocacy.
• Programs include virtual community chats, an NF1 community education series and in-person workshops for people with NF2-related hearing loss.
• Its services recently expanded to Delaware.