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…
Read MoreMay is NF Awareness and Action Month
This May, NF Midwest, and other NF organizations are coming together to turn awareness into action. We’re turning up the volume on NF Awareness Month. This year, many of us are calling it NF Action Month. Why? Because awareness opens eyes, action changes lives! All month long, we’re asking the community to share NFACTS (a play on NF facts and NF acts) to…
Read MoreNF1 PN Pain Scale Research Study
Offered by: National Institutes of Health (NCI)Conducted by: Dr. Pamela Wolters Recruiting for children (8+ years), adolescents, and adults with NF1 and plexiform neurofibromas (pNFs) for a research study to complete pain questionnaires electronically over a two-week period from home.
Read MoreJohns Hopkins Various Clinical Trials
Johns Hopkins Comprehensive NF Center Researchers at Johns Hopkins and around the world are investigating ways to slow the growth of NF-related tumors and prevent them from forming altogether. Although there is not yet a cure for either neurofibromatosis or schwannomatosis, some patients may benefit from clinical trials. Follow the link to learn more about the various…
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