Levi, 8 This is our beautiful son, Levi Howard. He was diagnosed in March of 2017 with NF1 when he was seven years old. We quickly discovered that he has a brain stem tumor, many cafe au lait spots (brown flat birthmarks), a learning disability and ADHD. He is also very short for his age…
Read MoreStacey and Matt – Faces of NF
We inherited NF1 from our mom, Shirley, who passed away from breast cancer at the age of 53. She fought cancer three different times. Since then research has shown that people with NF1 have an increased risk of cancer…especially breast cancer…and that cancer is often more aggressive in people with NF1. Stacey struggles with physical…
Read MoreTori – A Face of NF
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 MoreNew Guidelines for the Care of Adults with NF1
Great news! A new, detailed clinical practice guideline has been made available on the care of adults with neurofibromatosis type 1. This was written to help physicians treat their patients with NF1 and is a great resource to share with your doctor. It’s a wonderful piece published by the The American College of Medical Genetics and Genomics (ACMG)…
Read MoreNF Midwest Work Aids Development of Orphan Drug for NF
In February AstraZeneca and Merck announced that the U.S. Food and Drug Administration (FDA) granted Orphan Drug Designation (ODD) for selumetinib, a MEK 1/2 inhibitor, for the treatment of neurofibromatosis type 1 (NF1). Research and clinical trials on selumetinib and other MEK inhibitors have been possible in great part due to the lobbying work of…
Read MoreNF Midwest Funds NF2 Grant to MGH Researcher
NF Midwest, in collaboration with NF Northeast, has awarded Dr. Vijaya Ramesh from Massachusetts General Hospital, a grant for research in neurofibromatosis type 2 to test the combination of a novel drug with an mTORC1/mTORC2 inhibitor in meningioma and schwannoma cell systems. This study directly stems from the very encouraging large amount of data generated by Synodos…
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 MoreNational Pain Society Award Given to NF Pain Researcher
Frank Buono, PhD, one of our NF Midwest community members and recent speaker at NF Midwest’s November symposium, has been named as a recipient of a Young Investigators Travel Award from the American Pain Society. This is a great honor for him, but also a significant moment for neurofibromatosis as Dr. Buono’s work is on the evaluation of…
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