NF Community Chat – October
October 21st – NF patients and their families/friends are invited to join us at 7pm for a community-building virtual chat!
News & Events
NF Community Chat – September
September 20th – NF patients and their families/friends are invited to join us at 9am for a community-building virtual coffee chat!
Beyond Sound: Communication Strategies for the Deaf and Hard-of-Hearing NF2-SWN Community
November 8th – Join us for an in-person, interactive workshop and panel focused on support for deaf or hard-of-hearing patients living with NF2-related schwannomatosis (NF2-SWN). This program will highlight the unique communication strategies and resources used by individuals who are deaf or hard-of-hearing and provide insight from panelists sharing personal experiences and practical tools they rely on in daily life.
Tuesday Takeaways with Carey Pink: Music Therapy and Neurofibromatosis (NF)
September 30th – Carey Pink, Board Certified Music Therapist, will be sharing information on the neurological and psycho-social benefits of music therapy for individuals living with NF.
Tuesday Takeaways with Mike Sager: Productive Conversations with Healthcare Providers
August 12th – Mike Sager, Patient Education Manager with Alexion Pharmaceuticals, will describe tips to facilitate productive conversations you can use at upcoming medical appointments.
Tuesday Takeaways Session with Mike Sager: Transitioning to Early Adulthood
June 24th – Mike Sager, Patient Education Manager with Alexion Pharmaceuticals, will be sharing helpful resources and strategies for caregivers to use when transferring from pediatric to adult NF healthcare providers.
Maine Marathon, Half Marathon, and Relay
Maine Marathon – Run for NF Northeast Join Team NF Northeast at the Maine Marathon, Half Marathon, and Relay on October 5, 2025, in Portland, ME! This scenic course along
NF Community Coffee Chat – July
July 15th – NF patients and their families/friends are invited to join us at 7pm for a community-building virtual chat!
NF Community Chat – August
August 14th – NF patients and their families/friends are invited to join us at 7pm for a community-building virtual chat!
NF Community Chat – June
June 17th – NF patients and their families/friends are invited to join us at 7pm for a community-building virtual chat!
