Neurofibromatosis Network

09/04/2026

Please read this warning shared by our friends at Neurofibromatosis Midwest. Please do not buy an NF T-shirt unless it's from a trusted source. Unfortunately, people are preying on our community and they are extremely convincing.

09/03/2026

🌟 Happy ! Join us for the 15th Annual NF Strong 5K for Neurofibromatosis on Sunday, November 8th, at Overton Park, Memphis!

🕘 Registration: 9:00 AM
🏃‍♀️ Family Walk & 5K Run: 10:00 AM

Let’s celebrate and support our local NF community together! Every step helps make a difference. Sign up for early-bird pricing by October 11th: https://raceroster.com/events/2026/114566/number-nfstrong-memphistn

09/02/2026

For the out there!

I participated in “MEK Inhibitor Therapy in NF1: A Neuro-Oncology Forum on Recent Data for Improving Patient Care,” a CME/AAPA activity from

09/02/2026

From our friends at Neurofibromatosis Northeast!

Why do I ride for Coast to the Cure? Because I don’t “have to” … and I do “have to”

- I don’t have to worry about the uncertainty of what might happen in the future for myself, or my child, who has NF or schwannomatosis

- I don’t have to experience pain or disfigurement from having neurofibroma(s) or schwannoma(s)

- I don’t have to struggle at school or at work because of these conditions

But I do know from my experience as an NF doctor how hard these things are, so I do have to try to do what I can to support the people I care about who have to do these things that I don’t have to.

- Dr. David Miller
Boston Chilren's Hospital

However you are affected by NF, there is space for you to make an impact for everyone living with NF at our Coast to the Cure cycling event taking place in less than three weeks. There's still time to register: https://secure.qgiv.com/event/coasttothecure2026/

Saturday, September 29, 2026
Stage Fort Park, Gloucester, MA
Routes of 24, 40, and 66-miles

09/01/2026

Free Webinar: The Brains Behind the Diagnosis

Children with NF1 face challenges that aren't always visible — cognitive, behavioral, and emotional ones that can shape daily life just as much as the physical symptoms.
Join us for a conversation with Donald J. Bearden, PhD, ABPP-CN, FAES, a board-certified pediatric neuropsychologist and Associate Professor of Neurology at the University of Tennessee Health Science Center. As Division Chief of Psychology & Behavioral Health at Le Bonheur Children's Hospital, Dr. Bearden works to improve outcomes for kids with neurological and neurodevelopmental conditions through comprehensive assessment and innovative approaches to care.

He will share his expert insights into the challenges children with NF1 face beyond the physical aspects of the condition.

Following his talk, Patient Education Manager Annie Sukhnandan presents Advocating For Your Child, with practical guidance for parents navigating school, healthcare, and beyond.

🎟️ Free to attend — registration required.
👉 RSVP: https://us02web.zoom.us/webinar/register/WN_WEQ-orYxQj-D605Qp-H-MA

08/31/2026

👁️ That's a wrap on National Eye Exam Month!

August is ending, but the reminder shouldn't. A comprehensive eye exam does far more than update your prescription — it's one of the only times a clinician gets a direct, non-invasive look at the nerves, blood vessels, and tissue inside your body.

💡 Did you know? During a slit-lamp exam, your eye doctor may spot Lisch nodules — tiny, dome-shaped tan or brown bumps on the iris. On their own they're completely harmless: no pain, no vision loss, no treatment needed. But they can be a sign of neurofibromatosis type 1 (NF1). Lisch nodules are one of the clinical criteria used to diagnose it.

Sometimes the eyes really are the window. If you skipped your exam this month, there's always September.

08/28/2026

Neurofibromatosis affects all races, ethnic groups, and genders equally. Approximately 50% of those with Neurofibromatosis have a family history of the condition, while the other 50% result from spontaneous genetic mutations.

If you are interested in finding support or gaining more knowledge about neurofibromatosis, we encourage you to sign up here https://www.nfnetwork.org/stay-informed-signup. Join our community and empower yourself with the information and connections you need.

08/27/2026

🎉 Join Us for a Celebration of Abilities and Possibilities! 🎉

🗓 Saturday, November 14, 2026
📍 Biltmore Tennis Center Outdoor Courts
1150 Anastasia Ave, Coral Gables, FL 33134

✨ First... We Learn!
Join us at 10:00 AM for an insightful discussion with Dr. Mislen Bauer, Pediatrician and Geneticist, as she explores neurofibromatosis in depth. This will be followed by another great talk from Patient Education Manager, Samantha Blain.

🏓 And Then... We Play!
From 11:00 AM to 1:00 PM, enjoy an exciting Pickleball event hosted by The NF Network! NF patients and their families can play for FREE!

Let's come together to learn, play, and celebrate our amazing community!

👉 Register today: http://weblink.donorperfect.com/NFMiami2026

08/26/2026

For our NF2-SWN friends in or near the Massachusetts area. Neurofibromatosis Northeast will be doing this amazing workshop! See the original post comments for details.

Beyond Sound 2026

Beyond Sound panelists will share their personal perspectives on hearing loss and deafness, including challenges and experiences living with NF2-SWN. They will also offer practical insights, tools, and resources that have helped them navigate communication and everyday life.

Panelists include:

Omeir Awan will discuss his experience using Zander captioning glasses and the impact they have made in his life.

Steph Labrie will share the tools that have helped her, including learning and using American Sign Language (ASL), accessibility apps, and assistive technology that make communication and everyday life easier.

Leah Manth will discuss the benefits a service dog can provide for individuals affected by NF2-SWN. She will also share her experience with the application and training process involved in obtaining and maintaining service dog certification.

Christine Panza will share how she combines her auditory brainstem implants (ABIs) with lip reading and contextual clues to support communication.
Terri Rausch will talk about the everyday techniques she uses as a hard-of-hearing person in today's world.

Beyond Sound 2026 is an empowering, in-person NF2 workshop, where you’ll learn about and experience communication strategies and resources for living with hearing loss. Join us to learn about updates in NF2 and to build connections in the NF2 community.

Beyond Sound
Saturday, September 26, 2026
Waltham, MA
8:30am-4pm

Register here: https://www.nfnortheast.org/event/beyond-sound-2026-a-day-for-nf2-swn-patients-care-partners/

08/25/2026

If you weren't able to join us for our webinar on overcoming obstacles in neurofibromatosis care, there's no need to worry! The entire session is now accessible on our YouTube channel. Watch the Webinar: https://youtu.be/rcJCuQKrX00?si=gPGcaCqgqcmeovCN

To ensure you never miss out on future webinars and stay updated on news and events related to NF, we invite you to sign up for our newsletter. It’s a great way to remain connected and informed! Sign up here: https://www.nfnetwork.org/stay-informed-signup