Neurofibromatosis Network

Happy Flashback Friday! 🐥💛 Let’s take it back to last year’s Ducky Dash 5K for NF—where the vibes were high, the outfits were quacktastic, and the community showed up in the best way. Lake Herrick in Wheaton, IL May 16, 2026 Race starts: 9 AM raceroster.com/events/2026/10…

Thank you to every certified nurse for going the extra mile! Happy Certified Nurses Day! #CND2026 #neurofibromatosis

REMINDER: The deadline is tomorrow to RAISE YOUR VOICE for Neurofibromatosis Research! Now is the time to email YOUR members of Congress and ask them to support $25 M for NF research in FY2027 nfnetwork.org/advocacy/advoc…

Join us for a morning of purpose and community! Saturday, May 30, 2026 Check-in: 9 AM | 5K Start: 10 AM Come enjoy a beautiful morning and stunning views, knowing that every step you take is making a difference! raceroster.com/events/2026/11…

REMINDER: The deadline is about a week away to RAISE YOUR VOICE for Neurofibromatosis Research! Email YOUR members of Congress and ask them to support $25M for NF research in FY2027 through the Department of Defense and continued funding at the NIH. nfnetwork.org/advocacy/advoc…

Join NF Northeast for an inspiring day at the Journey in Focus retreat for individuals and families affected by NF1! Saturday, March 28, 2026 8:00 AM – 4:00 PM The Desmond Hotel Malvern, 1 Liberty Blvd, Malvern, PA 📷 Register Here: weblink.donorperfect.com/JourneyinFocus…

Join NF Families for the NF Strong Spring Concert! Woodstock Arts Event Green, 111 Elm St., Woodstock, GA, 30188 May 29th, 2026 5:30 PM - 9:30 PM Enjoy the incredible Dueling Pianos as you sing your heart out in an electrifying atmosphere! weblink.donorperfect.com/nfspringconcert

Join the #Neurofibromatosis experts on 4/29 at 11:15 AM CDT during #ASPHO2026 for an NF1-PN #MedEd event. Produced with @nfnetwork ➡️ bit.ly/NF26-T #HemeOnc

Check out this insightful interview with friend and advocate Sarah Powlison and Alexis Weisbrod of NFX. wkyc.com/article/sports… #neurofibromatosis #NFAdvocates #advocacymatters #NFawareness #clevelandcavaliers #bowtiegame

Don’t Snooze—Join the Fun! Early bird pricing for our 3rd Annual Ducky Dash ends on April 17th, so snag your tickets today! 🦆 Register here: raceroster.com/events/2026/10… #DuckyDash #WheatonIL #EarlyBirdPricing #RunForACause #Neurofibromatosis

Registration is now open for SketchNF! SketchNF is dedicated to raising funds and building a network for pediatric NF patients through art, one sketch at a time. For more information, visit: nfnetwork.org/events/sketch-… To register, follow this link: weblink.donorperfect.com/sketchnf2026

@CongressmanKean Thank you for helping spread NF awareness!

Thank you to Neurofibromatosis Network for stopping by my DC office this week! Neurofibromatosis is a genetic disorder that causes tumors to form on nerves throughout the body. For nearly three decades, @nfnetwork has built support for treatment and has worked toward finding a cure. I appreciate this group taking the time to share how Congress can support its mission of providing greater education, resources, and community for those living with NF and their families.

@ScullyCoffee4NF Thank you @ScullyCoffee4NF and all of the amazing @GillianA and #xfiles fans out there! Your support means the world to us!

@nfnetwork If you see your name, congrats! To claim prize, email scullycoffee4nf @ gmail. com with prizes 1-10 ranked by preference. Link in bio for prizes. Thx for supporting @nfnetwork! #ScullyCoffee4NF #TheXFiles #GillianAnderson 14/?

Allow me to reintroduce myself… #ScullyCoffee4NF is a fan fundraiser for @nfnetwork that started back in 2017. I’ll add everything you need to know in this 🧵 over the next couple weeks leading up to 2/23. If you’re a fan of #TheXFiles and @GillianA, give us a follow! 1/?

Transitioning from pediatric to adult care can be challenging, but there are practical tools available to help. Join us as experts guide us on how to make this process as smooth as possible. Saturday, March 7, 2026 9:00 a.m. - 12:30 p.m. Leawood, KS weblink.donorperfect.com/AdultCare

Today is National Rare Disease Day, a day that holds significant meaning for many individuals with NF. The zebra reminds us that we need to look beyond the obvious when it comes to health, considering the overlooked possibilities that might be affecting those we care about.

RAISE YOUR VOICE for Neurofibromatosis Research! Now is the time to email YOUR members of Congress and ask them to support $25M for NF research in FY2027 through the Department of Defense and continued funding at the NIH. Ihttps://www.nfnetwork.org/advocacy/advocacy-action/

As a NORD Member Organization, we’re proud to amplify the Earn Your Stripes: Rare Disease CME Challenge! Learn more and join the challenge: bit.ly/3MQfuYU #RareDiseaseDay #ShowYourStripes #MedEd #NORDRare

Last year brought big ups and downs for federal NF research funding. As we head to our 30th Annual NF Network Advocacy trip to D.C., we’re hopeful—but vigilant. Funding isn’t guaranteed. This week, 100+ advocates will urge Congress to sustain critical NF research support.