Neurofibromatosis Network

06/19/2026

Here’s a sneak peek of some of our Sketch NF superstars! This July, join us for a powerful celebration of art, courage, and community!

The Sketchnf Auction opens on July 22, 2026, featuring heartfelt artwork by children living with neurofibromatosis (NF). Every piece tells a unique story, and every bid helps raise awareness and support for NF research and families.

We're thrilled to announce that SketchNF artwork will be showcased in the Rare Square exhibit! Enjoy a special preview starting July 7, and don't miss the official opening celebration on July 29. Admission is free! https://www.nfnetwork.org/pages-events/sketchnf-gallery/?lang=en

Learn more about SketchNF here: https://www.nfnetwork.org/events/sketch-nf/ Let's make a difference together! 💙✨

06/18/2026

🎹✨ Just ONE MONTH to go until the NF Strong Spring Concert!
Join us on July 17 at Woodstock Arts for an unforgettable evening of music, laughter, and community featuring Music and Mayhem’s Dueling Pianos. Sing along to your favorite songs, enjoy delicious food from Reel Seafood, browse our silent auction, and spend a summer evening making a difference.
Pack a picnic or grab dinner on-site, bring your friends, and help support critical NF research, advocacy, education, and family support programs. Every ticket helps strengthen the neurofibromatosis community.
🎟️ Register or donate: http://weblink.donorperfect.com/nfspringconcert
💙🎹

06/18/2026

Research Opportunity for Adults with NF1.
We're sharing two research studies being conducted by researchers at Florida State University College of Medicine focused on understanding cognition, memory, and aging in adults with NF1.
Participants must:
• Have a diagnosis of NF1
• Be age 40 or older
• Live in the United States
• Read and speak English
NF1 Cognitive Aging Study
Participants complete a virtual interview and online survey and receive $40 compensation.
Screening survey: https://redcap.link/edpbo89j
MindTrack-NF1 Study
Participants complete a virtual interview, online survey, and a 10-day tracking period using a Fitbit provided by the study team. Compensation is up to $260.
Screening survey: https://redcap.link/MindTrack-NF1
Questions about the studies can be directed to the research team at:
[email protected]
[email protected]
Please note: These studies are being conducted by Florida State University College of Medicine. The NF Network is sharing this information as a resource for our community and is not involved in the conduct of these studies.

06/17/2026

We are excited to introduce Maggie, a Sketch NF Superhero! She is an enthusiastic participant in the auction, having taken part four times, and continues to inspire us with her remarkable story and artwork.

"My name is Maggie, and I am 12 years old. I’m in the 6th grade, and I have a passion for skiing, swimming, crafting, playing with my dogs, and spending time with my sister. I was diagnosed with Neurofibromatosis Type 1 (NF1) when I was six years old, which has led to the development of many neurofibromas throughout my body. These tumors often cause pain in my legs and back. This year, I underwent significant surgery in Boston to remove a tumor from my spine. I also enjoy teaching others about NF and participating in fundraising efforts for NF research."

To learn more about Maggie's journey, visit: https://www.nfnetwork.org/pages-news/spotlight-on-sketchnf-superhero-maggie/?lang=en

Registration for SketchNF artists is now closed. Stay tuned for the auction and gallery opening night in New York City! For more information, click here: https://www.nfnetwork.org/events/sketch-nf/

06/17/2026

From our friends at Neurofibromatosis Northeast!

🏃‍♀️ Thinking about running Falmouth this August?

We only have a few charity bibs remaining for the Falmouth Road Race — and spots are going quickly.

If it’s been on your bucket list, now is the time to jump in.

✔️ Guaranteed entry into an iconic race
✔️ Run with purpose for the NF community
✔️ Join an incredible team

Don’t wait — once these are gone, they’re gone.

👉 Register here: http://raceroster.com/registration/112177/entry?teamEntryToken=SRDJ5JBP2Q&year=2026&slug=the-2026-asics-falmouth-road-race

06/17/2026

From our friends at Neurofibromatosis Michigan!

The 40th Annual NF Picnic is less than six weeks away! 💙

Join NF Michigan on Sunday, July 26 from 1:00–4:00 p.m. at Rogue River Park in Belmont for an afternoon of food, fun, and community.

This year’s picnic will include food from , bingo, prizes, kids activities, and time to connect with other families and friends in the NF community.

Whether you have attended for years or this will be your first NF picnic, we would love to see you there. Bring your family, enjoy the park, and help us celebrate 40 years of gathering together in support of the NF community.

📅 Sunday, July 26
⏰ 1:00–4:00 p.m.
📍 Rogue River Park

We hope to see you there!

06/16/2026

Reminder: Free Webinar for NF Dads Tomorrow!

Join us for a supportive session designed for dads navigating the challenges of raising a child with neurofibromatosis (NF). Hear from fellow fathers and experts about managing appointments, caring for siblings, exploring treatment options, and finding balance in your roles.

Connect with others, gain practical strategies, and feel more confident in your journey.

This event is free, but registration is required! Don’t miss out! Register here: https://us02web.zoom.us/webinar/register/WN_aqppX6-3QRSt66uuw71gbg

06/15/2026

Calling NF families in the Michigan! Registration is still open for the Neurofibromatosis Michigan summer camp.

Registration is still open for NF Camp Michigan 2026 — a weekend camp for families affected by Neurofibromatosis.

📅 August 21–23, 2026
📍 Sherman Lake YMCA Camp

This overnight weekend camp gives kids, adults, parents, and caregivers a chance to connect with others who understand life with NF. Families can enjoy activities like arts and crafts, canoeing, team-building, kayaking, swimming, and a pirate-themed weekend of fun.

Thanks to a generous bequest from Karen Warren in memory of Justin Nesmith, NF Michigan is able to cover camp fees for Michigan residents. A $30 per person registration fee is required to reserve your spot.

⚠️ Space is limited, and all registration money must be received by August 1, 2026.
👉 Register here: https://www.nfmich.org/nf-camp-michigan-registration See less

06/13/2026

Great weather and fun walk today at our annual NF Strong 5K in Boardman, Ohio. We also had a special guest, Scrappy!