Tuesday Takeaways with Mary-Frances Garber
January 28th – Mary-Frances Garber, expert genetic counselor, will shed light on the various emotions/concerns that many NF families experience and teach strategies for navigating them.
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!
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 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.
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.
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.
Upcoming Events
12th Annual Cupid’s Chase 5K
February 8th – Join us for the 12th annual Cupid’s Chase 5K around Lake Quannapowitt in Wakefield, MA! All proceeds are donated directly to Neurofibromatosis Northeast.
2025 Steps2Cure NF Walk/Run Series
NF Northeast is excited to announce our tentative 2025 “Steps2CureNF” walk/run calendar of events! Registration details will be announced in the near future. Stay tuned!
Latest News
Dr. Nicole Ullrich Honored with Research & Impact Award – Press Release
NF Northeast is thrilled to announce that Dr. Nicole Ullrich will receive the prestigious Research and Impact Award in recognition of her unwavering commitment to neurofibromatosis (NF) research and the treatment of patients and families affected by this complex condition.
Bert Peluso Research Fund
NF Northeast and the Peluso family together established the Bert Peluso Research Fund Award in loving memory of Bert Peluso and the incredible impact he had on the lives of those across the neurofibromatosis community.
A Reason for Ritas – Postponed until Spring 2025
Due to unforeseen circumstances, we will be rescheduling this event until Spring 2025. We will announce the new date shortly and look forward to celebrating with you soon!