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…
Read MoreHydrocephalus Awareness Month
September is National Hydrocephalus Awareness Month, a time to be iNFormed about this condition that affects people of all ages. For those living with neurofibromatosis (NF), hydrocephalus can sometimes be an added challenge. Tumors along the optic pathway, brain, or spine may block the normal flow of cerebrospinal fluid, leading to pressure buildup that requires monitoring and,…
Read MoreThe NF1 Cognitive Aging Project
Participants 40+ May Earn $40. Florida State University College of Medicine is conducting a study to investigate cognitive patterns and predictors within middle-aged and older adults with NF1.
Read MoreSMART-NF1 Project
Parent’s May Earn $10. Kids 13-17 May Earn $210. Florida State University College of Medicine is conducting a study to improve understanding of cognitive, behavioral, and socioeconomic function in the daily lives of adolescents with NF1.
Read MoreA Big Win for NF1-PN Patients in Europe
The European Commission has granted conditional approval for EZMEKLY® (mirdametinib) to treat symptomatic, inoperable plexiform neurofibromas (PNs) in patients aged 2 and up with NF1. This makes it the first therapy in the EU approved for both adults and children. Why it matters Safety & Access Common side effects include skin rash, diarrhea, nausea, and…
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