Saturday, October 3, 2015
800 Arrowhead Villa Road
Lake Arrowhead, California
At the age of 16 I suffered an extreme lung hemorrhage that nearly took my life, and four months later was diagnosed with GPA/Wegener’s (Wegener’s Granulomatosis at the time). Since then I have gone through standard treatments, suffered 2 relapses, and struggled with injections, steroids, and maintenance medication. Through my teens and early 20’s I realized I wanted to do something to fight back against this rare disease, and help others who had been diagnosed as well. A friend inspired me to do something unprecedented to raise support for vascular disease, but it took me several months to decide exactly what that was.
In January of 2011, I made a phone call to Lynn Corwin, the Cleveland-Akron chapter leader for the Vasculitis Foundation. I had never met Lynn but somehow I knew she was the right person to call. I told her that I was thinking of starting a monumental project, that involved traveling around the country in the name of vasculitis awareness, and asked for her thoughts. She was thrilled with the idea, and much to my surprise, promptly asked me to be the featured speaker and musician at the next chapter meeting, where I introduced the project to my first big audience only 10 miles from my hometown.
The goals of my project are:
- To raise awareness of vasculitis.
- To donate funds to the Vasculitis Foundation.
- To connect with patients and their families in each area, particularly teens afflicted by chronic illnesses.