NF Newsletter
Find the most recent copies of our NF News newsletter, which feature community highlights, organizational updates, upcoming events, and more!!
News & Events
Treatment Landscape in NF1-Plexiform Neurofibromas
October 16th – Join us for a virtual educational event designed to inform individuals living with neurofibromatosis type 1 (NF1) related plexiform neurofibromas (PN), and their caregivers. Learn about updates in clinical trials, NF1-PN care, and a powerful mother/daughter journey.
Committed to Curing NF 2025
November 7th – The Malerba family invites you to join them at The Great American Beer Hall from 6pm to 9pm for a fun-filled fundraising evening that features delicious food, great company, exciting raffles, and more!
NF Northeast Fall Hike for NF: Never Stop Climbing – Mount Agamenticus
Unfortunately, we’ll be canceling this Saturday’s Fall Hike for NF at Mount Agamenticus. Thank you to everyone who showed interest and helped spread the word. We’re already planning more community
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!
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.
