I inherited NF1 from my father. I was diagnosed shortly after my birth. The doctor noticed that I had flat, milk-colored spots all over my body, known as café aulait, a symptom that led to my diagnosis. Because of NF, I have tumors all over the inside and outside of my body that are sensitive…
Read MoreAli – A Face of NF
I was diagnosed with neurofibromatosis type 2 (NF2) at the age of 10. Six Months after I was diagnosed, I had a tumor removed that made me deaf in my right ear and affected my balance. Very soon, I’ll be completely deaf. Tumors in my spinal cord cause me almost constant pain, a tumor by…
Read MoreJenny – A Face of NF
I was diagnosed with neurofibromatosis type 1 (NF1) when I was 16 years old. As a child in school, I suffered from learning disabilities and was put into special education classes. Then at the age of 34 my life was changed forever, I had to undergo a major surgery. Tumors began to grow uncontrollably inside my bladder and…
Read MoreBrittany’s Story
Did you know that in 2017 your donations provided research grants to the University of Chicago, the University of WI-Milwaukee, the University of Minnesota and Massachusetts General Hospital to further the understanding of NF1 and NF2 and related conditions? Your support now will help ensure that No One Fights NF Alone because NF Midwest CARES (Clinics,…
Read MoreA Special Letter From An NF Mom
From Jenn, mom of Audrey, a 5-year-old with NF1 I think your daughter might have a condition called neurofibromatosis. Don’t Google it. Look at me….. DON’T Google it. We’re All In this Together: Make a Donation Now Do you remember the first time you heard the word “neurofibromatosis”? Did you ignore your doctor’s advice and…
Read MoreDedicated Family
Erin and Jonathan are big on raising awareness for neurofibromatosis and being advocates for NF Midwest. The two have a young son, Cash, with NF. In a video below they discuss more about their son, NF Midwest, and neurofibromatosis. Many may relate to how Erin and Jonathan feel about Cash’s diagnosis and possible future. The family is truly…
Read MoreMadison Area Teen Gets Great Press for Neurofibromatosis
Marissa and her mom from Madison’s Great Steps team, Marissa’s Mighty Mob, did a fantastic interview on “Talk of the Town,” a segment on 57 News in Madison, Wisconsin. The two woman, along with their extended friends and family, are dedicated to raising funds and awareness for neurofibromatosis and NF Midwest. Last year their team…
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