In a City the size of Red Deer, one would expect there to be less than 30 people affected with the genetic condition, neurofibromatosis 1 (NF1) and very few others to have even heard of it. However, a Red Deer teenager has just changed that. We first met Ms. Courtney Willoughby last October when she and her mother came to Vancouver for a conference about NF1, the disease that she was born with. It isn’t easy for anyone to be ‘different’, especially during the teen years, but Courtney said that she was trying to educate people about NF1 by telling them her own story.

We were impressed when she contacted us in January to share a professional-looking YouTube video she had made about NF1. Soon afterwards, she told us that she would also like to raise money for NF1 research in our lab. Of course, any science lab is grateful for every research dollar, and we optimistically hoped that Courtney might raise perhaps a hundred dollars that we could spend on supplies for our research. She told us she was selling bracelets, and we remember thinking that it takes a lot of bracelets to earn $100.

The next thing we heard is that Courtney persuaded The Keg Restaurant to host her fundraiser, and that she had collected a number of donations for a silent auction. On Tuesday, over a video link, Courtney told us the fabulous news, “The total is $14,500,” she said. There is so much that our lab can do with that money — everything from trying out potential treatments on cells growing in test tubes to investigating ways to prevent serious complications in affected individuals. By using some of the money to fund a PhD student researcher, Courtney will be both contributing to NF1 research as well as to training a future NF1 researcher. And because NF1 knows no geographic or racial barriers these research achievements will ultimately benefit everyone all over the world.

Members of our lab are incredibly buoyed by the remarkable achievement of one young woman and the City that has supported her. We are so grateful to the people of Red Deer for caring about individuals they will never meet who have a genetic condition that most people can’t even pronounce. And of course, we are incredibly grateful to an ambitious and determined young woman, Courtney Willoughby, for dreaming big.

With sincere appreciation,

Jan M. Friedman MD PhD

Professor of Medical Genetics and Patricia Birch, MSc RN

Research Manager

Department of Medical Genetics,

University of British Columbia

www.friedmanlab.org