Many individuals with NF have concerns about whether their NF diagnosis places them at additional risk of side effects from the COVID-19 vaccine. Fortunately, we have no evidence of specific safety concerns related to the COVID-19 vaccine in people with NF, including no increased risk of benign or malignant tumor growth, pain, or other symptoms….
Read MoreVideo Series: Managing NF1 Plexiform Tumors
NeurologyLive recently posted a video series Managing Neurofibromatosis Type 1 Related Plexiform Neurofibroma in Patients of Different Ages. The series consists of five short videos presented by Dr. Kaleb Yohay, a pediatric neurologist and director of the comprehensive NF center at NYU Langone Health. NeurologyLive is a resource for busy healthcare professionals, and it may be helpful…
Read MoreSummer 2021 NF Midwest Newsletter
Check out our Summer 2021 NF Midwest Newsletter! The highlights of this issue include… Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Back Page
Read More2021 Scholarship Recipients and Distinguished Service Award
NF Midwest has awarded three $1,000 post-secondary academic scholarships and one new Distinguished Service Scholarship to four adults affected by neurofibromatosis or schwannomatosis. The program awards scholarships to students from our service area who are diagnosed with NF and are pursuing college degrees or certificates. This year the NF Midwest Board established a special Distinguished…
Read More2021 NF1 Diagnostic Criteria Update and Comparison of Changes
An update of the diagnostic criteria for neurofibromatosis type 1 has been published in Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics. This is an update to the original diagnostic criteria that was established at the National Institutes of Health (NIH) in 1987. The new criteria are the…
Read MoreTransitioning to Adulthood
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….
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