By Karissa Haberkamp | November 18, 2025 Researchers supported by NTAP have announced an exciting breakthrough in gene therapy for NF1. For the first time, scientists have created a smaller, working version of the NF1 gene, called a “mini-NF1.” They have packaged it into a specially engineered viral vector that can target tumor cells more…
Read MoreA Letter From Amy
When my son, Benjamin, came home from Camp NF this summer, he couldn’t stop talking about everything he had learned and everyone he had met. Mom Amy Benjamin has neurofibromatosis, and it meant the world to him to be around other kids who truly understand what living with NF feels like. At camp, he swam,…
Read MoreNovember is National Epilepsy Awareness Month
Did you know that November is National Epilepsy Awareness Month? According to the Epilepsy Foundation, individuals with NF1 are at a higher risk of developing epilepsy, with an estimated incidence of 4–7% compared to the general population, though some studies suggest the rate may be even higher. Epilepsy is a neurological disorder that can result…
Read MoreWhat You Missed: 2025 iNFo Fair
Our 2025 iNFo Fair brought our NF community together with a powerful theme: Be Proactive, Be Informed, Be Heard. The day was filled with learning, honest conversations, and connections. We welcomed families, care partners, clinicians, and advocates to share experiences and ask real questions about living with NF. We opened the morning by sharing what…
Read MoreChallenges of Managing NF1-Related Plexiform Neurofibromas (NF1-PN)
Are you and your HCP often in agreement with your treatment plan for neurofibromatosis type 1 (NF1) or neurofibromatosis type 1 with plexiform neurofibromas (NF1-PN) or are there times when you feel misunderstood? Clear communication is key to a successful patient/caregiver and HCP relationship, but are there aspects of our care management that each of…
Read MoreSamJam4NF’s Finale
They gave 10 AMAZING YEARS to the cause and raised a lot of funds. Thank you to the Oswald family and the entire SamJam team! After ten incredible years, the beloved SamJam concert series took its final bow in April and recently sent its last check to NF Midwest. What began as a local event…
Read MoreWomen with NF1 Have a 5X Higher Risk of Breast Cancer – Have a Plan, Get a Scan!
If you or someone you love has neurofibromatosis type 1 (NF1), it’s important to know that women with NF1 between the ages of 30 and 50 have a 5-times higher risk of developing breast cancer. After age 50, the risk is still more than 3 times higher than average. Along with this higher risk, breast…
Read MorePain Awareness Month
September is Pain Awareness Month! Chronic pain affects millions—including people living with NF and SWN. Tumors, bone complications, migraines, and other NF-related issues can make pain a daily reality. This month, we’re raising awareness about: Together, we can push for better pain care and understanding. Here are just a few resources on pain: 2013 NF Midwest…
Read MoreStrengthening the NF Community: Thanks to SpringWorks
SpringWorks Sponsorship Brings Hope and Support to the NF Community We are excited to share some wonderful news — SpringWorks Therapeutics is partnering with NF Midwest to sponsor upcoming in-person and online programs for those affected by neurofibromatosis (NF) and their families. Expanding Access and Support Over the next several months and into 2026, this sponsorship will allow NF…
Read MoreHelping Your Child with NF Thrive at School
Back-to-school season brings new routines, new teachers, and sometimes new challenges for families living with neurofibromatosis (NF). That’s why we’re sharing a valuable resource created by our partners at the Children’s Tumor Foundation. The NF Parent Guidebook: How to Help Children with Learning Challenges Associated with Neurofibromatosis Type 1 is a free, 160-page guide designed…
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