NF Midwest is proud to announce an upcoming webinar and resource produced by The NF Collective about transitioning to adult NF care. Join the NF Collective on Wednesday, February 24 at 6 PM CST for an inspirational webinar of young adult NF patients who will share personal experiences and advice on transitioning to adult NF…
Read MoreNF Midwest Provides Funds to Help NF Patients
NF Midwest recently provided funds to three NF providers through our Care Impact Grant Program. The NF Care Impact Grant program is an application-based program that provides funds to selected applicants who have an idea, program, or need that will directly help to improve care, or access to care, to patients with neurofibromatosis. Several months…
Read MoreA Look Back at our 2020 Scholarship Winners – 2021 Applications Now Open
In 2020, NF Midwest awarded $1,000 academic scholarships to six adults affected by neurofibromatosis or schwannomatosis. This is the seventh year for NF Midwest’s scholarship program which was piloted with funds from a charitable trust left to NF Midwest by Frances and Irma Napolilli. The program awards scholarships to students from our service area who…
Read MoreOptic Pathway Gliomas (Revised Article)
Optic pathway gliomas are benign (low grade) pilocytic tumors. They may involve any location in the optic pathway, starting on the optic nerve in the orbit (the eye socket), the optic chiasm (the area of the brain where the two optic nerves come together and intermingle) or the optic tracts and optic radiation which are…
Read MoreNF Midwest Co-Funds New NF2 Gene Therapy Project
Thanks to the support of our donors, NF Midwest is proud to be one of four NF organizations collaborating to fund a new NF2 Gene Therapy project. NF Midwest, NF2 BioSolutions, NF Northeast, and NF Michigan have combined forces to fund a USD$100,000 Gene therapy project at Dr. Wade Clapp’s Lab at the Indiana University….
Read More20 Million Secured for NF Research!
We did it! We’re pleased to announce that $20 million in federal funding has been secured for the Neurofibromatosis Research Program through the Congressionally Directed Medical Research Program (CDMRP-NFRP) for Fiscal Year 2021. The House and Senate just passed Fiscal year 2021 spending bills including this funding that are now on their way to the…
Read MoreReproductive Options in NF1, NF2, and Schwannomatosis (Revised Article)
People who themselves have been diagnosed with NF1, NF2 and Schwannomatosis, or who have a child with one of these diagnoses, often wonder whether future children of theirs will be affected with the same condition. There can be deeply-held beliefs and sensitivities that are accessed in the process of first talking about a genetic risk…
Read MoreNF1 and Velopharyngeal Insufficiency
Velopharyngeal insufficiency (VPI) is a resonance disorder that occurs during speech that results from the inability of the vellum (or soft palate) to meet with the nasopharynx (or the back of the throat). When a person has VPI, there is an incomplete closure between the velum and nasopharynx, forcing sound into the nasal cavity. VPI…
Read MoreSponsorship Shoutout: Hartigan’s Heroes and Romeoville Toyota
Annie, the captain of Hartigan’s Heroes, heard about Toyota Cares from a neighbor. She reached out to her local Toyota dealership and the rest was history! For 3 years now, Romeoville Toyota has sponsored Hartigan’s Heroes and NF Midwest’s Great Steps Walk 4 NF walks. Getting a sponsorship can seem intimidating but by simply asking…
Read MoreFundraiser Feature : Jessica and Ellies Crew
Let’s say hello to Jessica and her family! Her team, Ellie’s Crew, has been hard at work this year! Jessica came up with an inventive and FUN way to raise funds for her team and NF Midwest. Jessica aquired 12 raffle baskets and utlitizing social media sold raffle tickets for each one. By setting a…
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