Category: Education

Everyday Skills in NF1: What Parents Can Watch for and How to Help A practical resource for parents and caregivers from NF Midwest Parent Conversations Parents and caregivers affected by NF carry a lot of questions, and that’s normal.  Some are medical. Some are emotional. And many are practical:  That is why NF Midwest created NF Parent Conversations, a welcoming online…

Did you know that November is National Epilepsy Awareness Month? According to the Epilepsy Foundation, individuals with NF1 are at a higher risk of developing epilepsy, with an estimated incidence of 4–7% compared to the general population, though some studies suggest the rate may be even higher. Epilepsy is a neurological disorder that can result…

Our 2025 iNFo Fair brought our NF community together with a powerful theme:  Be Proactive, Be Informed, Be Heard.   The day was filled with learning, honest conversations, and connections. We welcomed families, care partners, clinicians, and advocates to share experiences and ask real questions about living with NF.   We opened the morning by sharing what…

If you or someone you love has neurofibromatosis type 1 (NF1), it’s important to know that women with NF1 between the ages of 30 and 50 have a 5-times higher risk of developing breast cancer. After age 50, the risk is still more than 3 times higher than average. Along with this higher risk, breast…

September is Pain Awareness Month! Chronic pain affects millions—including people living with NF and SWN. Tumors, bone complications, migraines, and other NF-related issues can make pain a daily reality. This month, we’re raising awareness about: Together, we can push for better pain care and understanding. Here are just a few resources on pain: 2013 NF Midwest…

September is National Hydrocephalus Awareness Month, a time to be iNFormed about this condition that affects people of all ages. For those living with neurofibromatosis (NF), hydrocephalus can sometimes be an added challenge. Tumors along the optic pathway, brain, or spine may block the normal flow of cerebrospinal fluid, leading to pressure buildup that requires monitoring and,…

Recordings from the 2024 iNFo Fair are now posted on NF Midwest’s YouTube channel youtube.com/@nfmidwest. There may still be more recordings to come later, as we get permission from presenters. The 2024 iNFo Fair was focused on research. Once again we would like to thank our presenters for taking the time to be with us, and…

Have you ever noticed faint, light brown patches on your skin? These “café au lait” spots are quite common, but having more than six can spark concerns about neurofibromatosis (NF). While the link exists, let’s take a deep breath and unpack what this really means. Andre Panossian, MD explains that NF type 1 and café au…

October is a busy month when it comes to health awareness campaigns, and among them is Health Literacy Awareness. This observance is dedicated to the importance of acquiring and comprehending health-related information and using that knowledge to make informed decisions about one’s well-being. I’ve frequently been in situations where I’ve left a medical appointment with…

October is breast cancer awareness month. Studies have shown that breast cancer can affect 1 in 8 women. For women with an average risk of breast cancer, the recommendation is to start breast cancer screenings at age 40. For those at a higher risk, such as women with neurofibromatosis type (NF1), the current recommendation is to start screenings by age…