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.
Your ongoing support has allowed us to take huge steps forward in 2016 in the fight against NF. Your efforts and contributions have been instrumental in advancing neurofibromatosis research, providing hope for the millions worldwide who live with NF, and bringing us ever closer to our shared goal of ending NF forever.