ASICS Falmouth Road Race 2026
August 16th – Offering limited bibs to run with NF Northeast for the 2026 Falmouth Road Race!
NF Northeast is the organization that helps patients through their Journey of Hope.
A diagnosis of NF1, NF2-related schwannomatosis, or schwannomatosis can happen to anyone at any age and at any time.
Our Vision: A world where the burden of neurofibromatosis does not exist.
Our Mission: To bring hope to those affected by neurofibromatosis and allied disorders.
What is NF?
Neurofibromatosis, pronounced neuro-fibroma-tosis, is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time. NF affects all races, all ethnic groups and both sexes equally. NF affects more people worldwide than cystic fibrosis and muscular dystrophy combined!
For more information on NF →
Who We Are
NF Northeast is a highly regarded resource for patients, physicians and scientists. We have provided over $3 million in research grants, and through our advocacy, have been pivotal in generating over $600 million in federally funded NF research. We are known as the “organization with the heart” because ours is a strong and caring community that provides support to newly diagnosed patients and their families.
For Patients & Families
Being faced with a diagnosis of NF can be extremely overwhelming. NF Northeast has created programs and resources to help patients and families cope with the challenges that come with NF. Our approach is simple: Science, Solutions, Support. We hope that you will find comfort in knowing that NF Northeast is with you every step of the way.
For more on family & patient resources →
Sign up to receive our newsletters and other updates →
For Researchers
NF Northeast is committed to advancing biomedical research in fields relevant to neurofibromatosis and has been funding research proposals since 1990. To date, we have granted close to $3,000,000 to fund proposals from researchers or institutions both within and outside of the northeast United States. Fields of research include basic science, translational, and applied clinical trials.
Discover our research programs →
How to Get Involved
There are a number of ways to support the patients, families, researchers and others looking to fulfill our mission of hope and progress. Donations; community networks; fundraising campaigns; third-party events; creating awareness; community outreach and many more.
Find out how you can support our mission →
News & Events
NF Northeast is involved with numerous events every year involving hundreds of volunteers, families, organizational sponsors, and other supporters. We raise awareness, provide opportunities for positive action and raise funds that support our many goals, programs and research. In addition, we strive to let you know about important news and progress that give hope to our entire community.
News and Events →
Boston’s Run to Remember
Run Boston’s Run to Remember for NF Northeast! Take on the Boston’s Run to Remember Half Marathon or 5-Miler and make your miles matter! This inspiring race honors fallen first
NF Coffee Chat – April
April 18th – NF patients and their families/friends are invited to join us at 9am EST for a community-building virtual coffee chat!
Koselugo Approved in the US For Adults with NF1
We are incredibly excited to announce that Koselugo (selumetinib) has been FDA‑approved for adults with NF1‑related symptomatic, inoperable plexiform neurofibromas (PN)! Koselugo is an oral MEK inhibitor developed by Alexion,
Steps2Cure NF Event Series 2026
We’re back for another year of Steps2Cure NF fundraising walks! With the addition of two brand new walks this year, we are now offering NINE Steps2Cure NF events taking place across the northeast—find the walk closest to you!
Recognizing Dr. Kaleb Yohay with the NF Compassion in Action Care Award
On October 23rd in New York City, members of the NF Board of Directors proudly presented Dr. Kaleb Yohay with the NF Compassion in Action Care Award. This honor celebrates his
