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…
Read MoreBen’s Trip to Camp
Each year NF Midwest provides the opportunity for families to apply for scholarships for their son or daughter to attend a summer camp experience specifically for youth affected by NF. We want to highlight one youth’s experience this year at Camp Brainy Ridge Camp NF located in St. George, Virginia. We asked Ben and his…
Read More2024 Scholarship Recipients
The NF Midwest Scholarship Program is proud to add another year of empowering students with neurofibromatosis (NF) to achieve their educational dreams. We continue to honor the generous gift from Frances and Irma Napolilli, which allows us to award scholarships of up to $1,500 to deserving individuals. These recipients are models of hard work and…
Read MoreThank You! You Are On Fire!
We are absolutely thrilled to share some amazing news: thanks to your incredible generosity, you’ve raised an outstanding $144,024 for NF Midwest! These funds make a real difference in the lives of children, adults, and families impacted by neurofibromatosis. Your support fuels the fire of our mission of working with Clinics, raising Awareness, advancing Research,…
Read MoreFebruary 29th is Rare Disease Day
February 29th is Rare Disease Day. In the United States alone, according to the National Organization for Rare Diseases (NORD), at least 25-30 million individuals fight invisible battles against rare diseases. That’s right, millions. But what defines “rare”? By NORD’s definition, it affects less than 200,000 people in the US, although different countries may have…
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