“We learned of Sloan’s diagnoses in early December of 2015. It was right before his 5th birthday... I believe that we will always have to deal with NF. He will always be a bit behind all of his peers. I'm confident, though, that it will not detour Sloan from accomplishing all that he wants to accomplish in life."
By Greg Davis
Iron Butt 4 NF, an odd name for a fundraising event wouldn't you say? If you've ever ridden a motorcycle for hundreds of miles, you can relate to the title.
Rachel Mindrup is a professional artist and art educator. Rachel’s son, Henry, was diagnosed with NF at the young age of 4 months old. As Rachel, with her husband by her side, navigated her way through this new world and figured out how to help her son, she discovered a way to help her family and the entire community, using her artistic talents and interest. Click thru to read Rachel’s story in her own words.
“I was diagnosed with NF when I was a child. When I was kid, I had some trouble paying attention due to a mild form of dyslexia. From kindergarten all the way through college I would get extra time on tests, I was never medicated. My mother and my teachers, always understood me, and I always did my best. As of right now it's pretty difficult since I have some tumors growing on part of the nerve in my neck area on the right side. At the moment I can no longer grasp, write, or pick up anything with my right hand. I'm also in pain 24/7. Some nights the pain is so severe that I get no sleep. I'm learning to do things with my left hand."
The Neurofibromatosis Therapeutic Acceleration Program (NTAP) is now accepting applications for the Francis S. Collins Scholars Program in Neurofibromatosis Clinical and Translational Research. The Collins Scholars program brings together a community of exceptionally well-trained clinician scientists who will be leaders in the field of NF1 research.