Category: Education

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…

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…

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…

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….

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…

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…

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…

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…

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…

We want you to know that we are working from home to do anything we can to continue to support you and your families in this extremely challenging time for our country and the world.  One of the biggest challenges we are hearing about is trying to keep our kids engaged in their school assignments and…