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 MoreVolunteer Spotlight: Tim E
Meet Tim and Sue! Tim is one of our amazing, out of this world, extraordinary volunteers who heads up the Madison Great Steps Walk 4NF! Tim and Sue attended the first Madison walk, hosted by Diana. There were maybe 20 people there, Tim says they don’t remember how they heard about the walk. He became…
Read MoreDuring COVID19 Children and Adults Still Struggle with Neurofibromatosis
The hearts and thoughts of the NF Midwest staff, board, and community are with people all over the world who are struggling with COVID19 and the financial, social, and emotional issues this worldwide crisis brings with it. Neurofibromatosis can feel like such a small concern in light of the bigger issues of today, but all…
Read MoreJesse’s Clinical Trial Experience
In 2017, I became involved in a clinical research trial through Medical College of Wisconsin for benign cutaneous neurofibromas. Being a part of a research trial was driven by the lack of research and progress for neurofibromatosis, as well as a desire to assist the NF community with moving forward in innovative ways. At the…
Read MoreMeet Sera, NF Midwest Area Clinical Trial Participant
Sera has a tumor that runs the length of her arm, all the way from her hand up to her shoulder. This inoperable tumor has caused her extreme pain as well as disfigurement. Diagnosed with Neurofibromatosis (NF) Type 1, fifteen-year-old Sera has had to endure many trials in her young life. However, Sera is now…
Read MoreEvita – A Face of NF
My name is Evita Ali and I have NF1. I was diagnosed with neurofibromatosis when I was 30years of age. All my life, since I was a child, and going to the doctor for various things, thedoctors always seemed intrigued with the amount of birthmarks I had. Not one doctor knewanything, so we just summed…
Read MoreSilas – A Face of NF
My sixteen-year-old son began getting café au lait spots at two months old. Our pediatrician at the time gave us a very grave description of neurofibromatosis. My husband and I were in complete shock, disbelief, and crushed with the information that she had given us. At that point, he only had the CALS, so we…
Read MoreShad – A Face of NF
I joined the Army at 19 years old. I did all the training and arrived at my duty station. In the mornings we did physical training, which involves running. Well, my knee started to hurt after a while, and I ignored it. I enjoyed running, as it’s great way to clear my head and I…
Read MoreSarah- A Face of NF
My STRONG and POSITIVE Sarah was born with NF1. Sarah has had 12 surgeries, 14 chemo sessions, 58 MRI’s, and radiation to the brain. Sarah has an optic glioma on her right eye, and she also has tumors in her medulla and pons. We were told she would not live past age 6. Sarah turned…
Read MoreBen – A Face of NF
My name is Ben. I’m graduating high school next week and heading to college this fall. Neurofibromatosis type 1 was confirmed by my pediatrician at my one-year old visit. I am the first in my family with the diagnosis. Thankfully, I’ve had minor complications with only one tumor removal and one plexiform tumor. Academically, I’ve…
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