Neurofibromatosis Northeast

NF Summer Camps Information Session

March 5th – Join us to learn more about upcoming summer camp programs for our NF community with Double H Ranch, The Woodlands Camp, and more.

Coast to the Cure 2026

September 19th – Join us for our 15th annual Coast to the Cure NF, a cycling event that empowers riders to pedal with purpose—raising vital funds for patients and families affected by neurofibromatosis (NF) and its allied disorders.

Family Bowling Event – Connecticut

February 22, 2026 – We’re thrilled to bring the Hartford area NF Northeast community together for a night of strikes, spares, and connection! Meet other families and enjoy some fun in a relaxed, welcoming environment.

13th 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.

Journey in Focus: A Retreat for Patients with NF1 in the Greater Philadelphia area

March 28th – Join us for Journey in Focus, a one‑day retreat in Malvern, PA designed for individuals and families affected by NF1. Connect with experts, gain practical tools, and take part in meaningful conversations that support every stage of the NF1 journey.

NF Coffee Chat – February

February 14th – 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!