Neurofibromatosis Network

Beautiful start for our third annual Ducky Dash! #connectingnf #nfawareness #neurofibromatosis

💙 Happy NF Awareness Month! 💙 All month, we'll share important facts about neurofibromatosis (NF). 🔹 NF is not contagious. Contact with a person who has NF cannot transmit the condition. This NF Awareness Month, help us spread understanding, support, and hope for everyone affected by NF. #ConnectingNF #NFAwarenessMonth #Neurofibromatosis #NFStrong

💙 We hear you, NF community. As costs continue to rise, we never want finances to stand in the way of connection, support, and keeping our May NF Awareness Month celebrations going strong together. That’s why we’re bringing back kids tickets and offering $10 off adult 5K registration with code: BackTo2025 🎉 Already registered and would like the $10 refund? Reach out to Debbie at [email protected]. Most importantly, we want our community together. 💙 Visit nfstrong.org for the registration link! #ConnectingNF #NFAwarenessMonth #NFStrong #Neurofibromatosis #kcmo #5krun #runnersofinstagram

💙 We hear you, NF community. As costs continue to rise, we never want finances to stand in the way of connection, support, and keeping our May NF Awareness Month celebrations going strong together. That’s why we’re bringing back kids tickets and offering $10 off adult 5K registration with code: BackTo2025 🎉 Already registered and would like the $10 refund? Reach out to Debbie at [email protected]. Most importantly, we want our community together. 💙 Visit nfstrong.org for the registration link! #ConnectingNF #NFAwarenessMonth #NFStrong #Neurofibromatosis #boardmanoh #5krun #runnersofinstagram

As we continue recognizing NF Awareness Month, we’re honored to introduce you to brave little Claire. 💙 “This is our daughter Claire. She is currently three years old and began her journey with NF1 when she was about 18 months old. Although she has faced many challenges along the way — including tumors in her brain and vision problems — she has remained strong, happy, brave, and loving through it all. Claire started chemotherapy less than a year ago, and we are thankful to share that she has experienced many positive effects from treatment so far. As we continue this journey with NF1, we couldn’t be more proud of her and all the courageous individuals fighting this condition.” Claire’s story is a beautiful reminder that strength can come in the smallest packages. Her smile, courage, and resilience inspire everyone around her. Please join us in celebrating Claire and all those living with NF. 💫 #ConnectingNF #NFAwarenessMonth #NFStrong #Neurofibromatosis #Hope #Strength #Inspiration

Throughout May, we have a series of events designed to unite the NF community and raise funds to support our mission: finding better treatments and, ultimately, a cure for neurofibromatosis. We achieve this by promoting scientific research, enhancing clinical care, and providing outreach through education and awareness. Additionally, we offer hope and support to those affected by NF. On May 16, you can help support our mission and be part of the community by attending or donating to our third annual Ducky Dash in Wheaton, IL. To register or donate, please visit nfstrong.org for the link. #ConnectingNF #Neurofibromatosis #HopeForNF #NFAwareness #WheatonIL #5K #Run4aCure

As National Nurses Week comes to a close, we want to extend a heartfelt thank you to the nurses who support the NF populations with compassion! #neurofibromatosis #ConnectingNF #NationalNursesWeek #ThankYouNurses #NFSupport #HealthcareHeroes

💙 Happy NF Awareness Month! 💙 All month, we'll share important facts about neurofibromatosis (NF). 🔹 NF is a lifelong condition that affects people of all genders and ethnicities equally. This NF Awareness Month, help us spread understanding, support, and hope for everyone affected by NF. #ConnectingNF #NFAwarenessMonth #Neurofibromatosis #NFStrong

Happy Mother's Day to Mom's everywhere! At NF Network, we know caring for a child with neurofibromatosis (NF) comes with unique challenges—and you don’t have to face them alone. Our webinar on June 10 is designed specifically for moms who are balancing the emotional, medical, and day-to-day realities of raising a child with NF. Attendees will hear from fellow mothers and experts about managing care, advocating for your child, and finding moments of strength along the way. The session will also create space for connection, shared experiences, and practical strategies that can make the journey feel more manageable and supported. This event is free, but you must register to attend. Visit our calendar page at nfnetwork.org for a link to register. #neurofibromatosis #mothersday

Throughout May, we have a series of events designed to unite the NF community and raise funds to support our mission: finding better treatments and, ultimately, a cure for neurofibromatosis. We achieve this by promoting scientific research, enhancing clinical care, and providing outreach through education and awareness. Additionally, we offer hope and support to those affected by NF. On May 16, you can help support our mission and be part of the community by attending or donating to our third annual Ducky Dash in Wheaton, IL. To register or donate, please visit nfstrong.org to the link. #ConnectingNF #Neurofibromatosis #HopeForNF #NFAwareness #WheatonIL #5K #Run4aCure

It's Ducky season and we are busy! T-Shirts have arrived and auction items are being put together. Will you join us next weekend to help raise funds and awareness for NF? Visit nfstrong.org to register or donate. #neurofibromatosis #connectingnf #duckydash #5k #runnersofinstagram

NF Strong has been more than a 5K — it’s been a community united in hope, strength, and support for everyone affected by neurofibromatosis. 💙 At the heart of that story is Gus. Diagnosed with NF1 as a young child and undergoing brain tumor surgery at just 3 years old, Gus and his family turned their journey into advocacy for countless others facing NF. Today, Gus is in high school, thriving, and proudly serves as the inspiration and mascot behind our long-running NF Strong walk program. NF Strong isn’t about finish times — it’s about showing up for one another. Families, survivors, advocates, and supporters come together year after year to walk, run, volunteer, and raise awareness for the NF community. Join us this year and be part of the movement: 📍 North Kansas City, MO — May 30, 2026 📍 Boardman, OH — June 13, 2026 Visit nfstrong.org and come make memories, celebrate the strength of the NF community, and help us keep moving forward — together. We are NF Strong. 💙 #ConnectingNF #NFStrong #Neurofibromatosis #NFawareness #WalkForACure #KCMO #BoardmanOH #5K