I was diagnosed at age 2. I have cafe au laits, bilateral optic gliomas, a few cutaneous neurofibromas, innumerable internal neurofibromas, and a large plexiform neurofibroma that sits behind my stomach that I have named PITS (Pain In The Stomach). PITS really lives up to his name. Starting in 2018 he decided to start causing…
Read MoreNF Collective: Providing Reliable Information for Neurofibromatosis
With a few key words and the push of the enter key you can search pretty much any topic you can think of. Although this instant access to information is amazing it can also lead to confusion especially in the world of neurofibromatosis (NF). Several NF organizations recognized the need to work together to address…
Read MoreWhat to Do if You Have an Insurance Issue
Insurance issues are a huge headache no one wants. Many are in the habit of tossing out their insurance benefit of explanation or claim statement when they receive them in the mail. It is so important to read them and make sure they are correct. I was once charged for a service I never received…
Read MoreOptic Pathway Giloma and Vision Testing
Optic Pathway Gliomas are often referred to as OPG and may affect those with neurofibromatosis type1 (NF1). In most cases OPG are benign and may never cause an issue, however in some cases they could lead to visual impairments or loss. When and how often to screen for OPG has been somewhat a confusing matter…
Read More$25 Million for NF & SWN!
$25 million has been allocated specifically for the Neurofibromatosis Research Program (NFRP) in the Fiscal Year 2023 Omnibus appropriates bill that was passed by the House, December 23rd! It only awaits the President’s signature to be final. That’s $5 million more than last year!! Every year NF Midwest and other NF organizations and volunteer advocates…
Read More211 Call Line to Find Resources
Over 200 agencies and organizations such as The United Way, Community Action, and Goodwill just to name a few have banded together to create what they call 211. 211 is a non-emergency service that is available 24/7 and links its users to a referral specialist in their location. All a user has to do is…
Read MoreResources for Common Needs
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…
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