Category Archives: My Journey

Moving to Willow!

We just returned from watching the start of the 2016 Iditarod. It was very strange to not be running in this year’s race. The day before the race started, I spoke at the Iditarod Winter Teacher Conference, great group! And we bought a lot and are building a house in Willow, 6 miles from Dream a Dream Dog Farm – we are moving to Alaska!  Then I can just take a snow machine to the kennel – here we come dogs!Leaders March 2016 - Copy (1280x905)

Rare Disease Day at KGI

First screening of Banner on the Moon was yesterday at the Keck Graduate Institute with Dr. Ian Phillips, Director of the Center for Rare Disease Therapies. It was a private screening for their annual Rare Disease Day at KGI. Dr. Phillips is holding the NORD banner I held on the summit of Mt. Everest and at the finish line of the Iditarod. I am holding NORD’s 2016 Handprints Across American flyer. Monday, Feb 29th is Rare Disease Day USA 2016.Keck Institute RDD 2016

My Journey

Since my rare disease diagnosis in 2007, my life’s focus changed and I started traveling on a new path. The road has been very challenging but also very rewarding. These are symbols of that journey: Mt. Everest Summiteers’ Medal, Iditarod Finishers’ Belt Buckle, and NORD Rare Disease Public Awareness Award.Three medals


Yesterday I spoke at the Association of Applied Sport Psychology Conference in Indianapolis. The title of my presentation was Personal Stories of Resilience. After my presentation there was a panel discussion which had a very interesting effect on me: until then, I had taken for granted my ability to preserver.