If you or someone you love is living with NF, you know the costs can add up: therapies, assistive devices, specialists, and more. An ABLE account is a savings tool built to help with exactly that. The Basics ABLE stands for Achieving a Better Life Experience. It’s a tax-advantaged savings account for people with disabilities….
Read MoreNothing to Fear: A Children’s Book on NF
For young children with neurofibromatosis, medical appointments can feel big, unfamiliar, and sometimes scary. An eye exam, an MRI, a doctor’s visit, or even the mention of a needle can bring up questions that are hard for a small child to understand — especially between the ages of 3 and 7, when imagination is strong…
Read MoreNF Awareness Month Reached Across Our Six-State Region
Thank you to everyone who helped raise awareness for neurofibromatosis (NF) during May! This year, NF Midwest families and advocates helped bring NF Awareness Month into communities across our six-state region. Through state and local proclamations, more people had the opportunity to learn about neurofibromatosis and recognize the families who live with NF every day. …
Read MoreMeet the 2026 NF Midwest Scholarship Recipients
The NF Midwest Scholarship Program is proud to celebrate another year of supporting students with neurofibromatosis as they work toward their educational dreams. Each year, NF Midwest awards scholarships to students across our six-state region. These students are pursuing their goals while also navigating life with NF, and we are honored to play a small…
Read More2026 Scholarship Applications Are Open!
NF Midwest Scholarship Applications are now open! This is your sign to kick off the new year by pursuing your post–high school education goals. The scholarship is available to adults with NF, including neurofibromatosis type 1, NF2-related schwannomatosis, and all other types of schwannomatosis. Applicants must live within our service area of Illinois, Indiana, Iowa,…
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 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 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 MoreNF Midwest December Update
Check out NF Midwest’s December update. If you are connected with us, you should have received this in an email! If not, use one of our contact forms to connect with us. The highlights of this update are various new and existing research studies looking for participants. These can range from simple surveys to a long study…
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