Neurofibromatosis Network

05/29/2026

05/29/2026

This study is not conducted by the NF Network; we are simply sharing this information.
If you are interested in participating, please email or submit the form via this link: https://forms.gle/aS5cETZEhg5hZvTE8
-Katie Howard, MS ([email protected])
-Rithvik Ghankot, MS ([email protected])
-Frank Buono, PhD ([email protected])

05/29/2026

As we conclude our recognition of NF Awareness Month, we are honored to introduce Ananda. "I was diagnosed with NF1 when I was one year old. That’s when my journey with neurofibromatosis began. Initially, the news was very difficult to handle, but over time, we learned more about the condition and adapted it into our daily lives.

Ananda is a joyful child, full of life and happiness. He is a true warrior and a real-life superhero. He has annual check-ups and is an empathetic person. We also do a lot to raise awareness and promote visibility for this condition, helping others learn about this genetic disorder, understand it better, and support those who live with it.

Thank you very much for all the work you do. Sending my best regards and a big hug." — Ananda

To read more NF stories shared with us, visit: https://www.nfnetwork.org/pages-news/stories-of-strength-honoring-nf-awareness-month/?lang=en

05/28/2026

🎉 The KCMO 5K Walk for NF is THIS WEEKEND! 💙
Join us on May 30 as we team up with NF Central Plains for an inspiring day of community, connection, and hope in support of those affected by neurofibromatosis (NF). Every step helps fuel critical research, improve clinical care, raise awareness, and support families living with NF.
💙 We also know times are tough, and we never want cost to stand in the way of coming together as a community. That’s why kids tickets are back and adult registration is now $10 OFF with code: BackTo2025
Whether you walk, run, donate, or cheer us on, your support truly makes a difference.
Register or donate here: https://raceroster.com/events/2026/114371/number-nfstrong-north-kansas-city-mo?utm_id=97758_v0_s00_e231_tv2_tp1_a1demo0e10exfh

05/27/2026

With heavy flooding and dangerous weather conditions impacting Georgia, we have made the difficult decision to postpone our Spring Concert originally scheduled for Friday, May 29. While we were looking forward to gathering with all of you, the safety of our NF community, supporters, performers, and volunteers must come first.

We are grateful to share that the concert has been rescheduled for Friday, July 17, and all previously purchased tickets will remain valid for the new date. If you already have tickets, there is nothing you need to do — we hope to see you there this summer.

Although this change comes with disappointment, our mission and community remain as strong as ever. Your support helps us continue raising critical awareness and funding for neurofibromatosis, bringing hope to individuals and families affected by NF every single day.

Thank you for your understanding, flexibility, and continued belief in this community. We truly hope you will still join us on July 17 for what promises to be a meaningful and uplifting evening together.

If you are unable to attend the rescheduled date, please contact [email protected] to request a refund.
With gratitude,
The NF Network Team

05/27/2026

As we enter the final week of NF Awareness month, we would like to say thank you to SpringWorks Therapeutics for making our NF Awareness events possible this month!

05/27/2026

Camp 411 from our friends at Neurofibromatosis Michigan!

🏴‍☠️ Ahoy, NF families!

Registration is now 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

05/26/2026

Let’s unite this month to raise awareness for NF! This graphic highlights some possible symptoms, but it’s important to remember there are many more. Every share and comment brings us one step closer to educating the world. Together, we can inspire change and make a difference!

05/26/2026

As we enter the final week of NF Awareness month, we would like to say thank you to Alexion Pharmaceuticals US for making our Ducky Dash and our upcoming Kansas City 5K for NF possible this month!

05/25/2026