Many have heard the expression “It’s not what you know. It’s who you know.” That rings true when it comes to figuring out who to contact if you need certain resources. Many states and counties vary greatly on what resources/programs are available. Each program can also have different eligibility and income requirements, so it is…
Read MoreNF Type 1 and Cancer Risk and Screening
An article by Sharon Reynolds from the National Cancer Institute highlights the importance of people with neurofibromatosis type 1 (NF1) to be diligent about paying attention to their bodies and symptoms to help detect cancer. NF1 is known to cause neurofibromas which are normally benign, however people with NF1 may be at a greater risk…
Read MoreIt’s National Love Your Freckles Day
November 22nd is national Love Your Freckles Day! Growing up I didn’t know much about freckles other than the more I was in the sun, the more they showed on my nose. Who knew that freckles are more than a thing of beauty, they can be indicators of much more. Often these tiny brown dots…
Read More2022 Scholarship Recipients
Last year the NF Midwest Board established a special Distinguished Service Scholarship Award, which provides extra funds to applicants who have demonstrated an outstanding contribution to the NF cause and the mission of NF Midwest. Going forward, this special scholarship will not be awarded annually but by merit. The NF Midwest Board will evaluate applicants…
Read More2022 Walk4NF Shirt Colors
Big news! Jay has chosen a shirt color of red with blue ink for NF Midwest’s 2022 Walk4NF season. These are his favorite colors! He was earned the honor of choosing the colors after his team, The Jay-Walkers, raised more funds for the 2021 walk fundraising season than anyone else with a total of $13,105….
Read MoreNeurofibromatosis and the COVID-19 Vaccine
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…
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