An interesting article was just published in the Journal of Paediatric and Child Health called “Perceived fatigue in children and young adults with neurofibromatosis type 1”. This was a small study done in the United Kingdom that compared 75 children with neurofibromatosis type 1 to their 16 unaffected siblings to determine if fatigue was more…
Read More2019 Scholarship Recipients
In 2019, NF Midwest awarded $1,000 academic scholarships to ten adults affected by neurofibromatosis or schwannomatosis. This is the fifth year for NF Midwest’s scholarship program which was piloted with funds from a charitable trust left to NF Midwest by Frances and Irma Napolilli. The program awards scholarships to students from our service area who…
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 MoreBIG NEWS: Drug up for FDA Approval for NF1 Plexiforms
Big news just hit…though it has been expected! Many of us have been following the success of the drug selumetinib in treating people with neurofibromatosis and plexiform tumors and it was just announced that AstraZeneca and Merck & Co., Inc. has now applied to the US Food and Drug Administration (FDA) for approval of the…
Read MoreNew Study Results on Pain and Patients with Neurofibromatosis Type 1
Frank Buono PhD, from the Department of Psychiatry at Yale School of Medicine and longtime member and supporter of NF Midwest, just published an article on pain and neurofibromatotis type 1 in the Journal of Pain Research called Pain symptomology, functional impact, and treatment of people with Neurofibromatosis type 1. Thank you to those in…
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…
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