MY VIDEO WAS SELECTED: “On August 1, NORD launched 35 Years and Growing: Personal Stories from the New Era of Patient Advocacy in which rare disease advocates shared their personal reflections on rare disease advocacy through self-recorded video. We were thrilled to see so many submissions come in for this campaign, and in honor of our 35th Anniversary, we have selected 35 submissions to be featured on our Youtube channel.”
I will continue to work to get the word out. (Remember this is self-recorded on my cell phone after a long day of work – so I look a little tired – because I was.)
Wow! After 14 years of searching for answers, 10 years ago, yesterday, I was diagnosed with Wegener’s granulomatosis, a rare and life-threatening disease with no cause, no cure. Since then I have taken life 10-feet-at-a-time and done amazing things: I held the NORD (National Organization of Rare Disorders) Banner on the summit of Mt Everest and at the finish line of the 1000-mile Iditarod. In 2015, NORD awarded me the first-ever Rare Disease Public Awareness Award for my work in rare disease advocacy. Forrest Gump was right, “Life is like a box of chocolates. You never know what you are going to get.” I took what I got and ran with it, literally.
Banana meets the Beams. My long-time friends, Bill and Terri just arrived at the kennel. As a student at Cal State Fullerton, Bill was my mentor. During my graduate years we became friends. We later became colleagues and he is now the retired Kinesiology Chair. When I was diagnosed with Wegeners, he was the second person I told (Larry was the first). And throughout my journey up mountains and running sled dogs across Alaska, he and Terri have been among my greatest supporters. I am so excited that they are here to experience a taste of our Alaskan life.
Puppy Pile! Today we started walking the puppies (Precious Jems Litter) on the trail, with Mom (Manny, short for Manny Hot Springs of the Iditarod Litter) supervising of course.
Rare Disease Day is Feb 28th. On March 4th I will be starting the 1000-mile Iditarod Sled Dog Race. In 2015 I completed the 1000-race for the 1st time, and stood at the finish line holding the NORD (National Organization of Rare Disorders) Banner that I held on the summit of Mt. Everest in 2010. This is Cy, he was on that team. He is now retired but he is still my “special boy.”
Great photo of Vern Halter and Susan Whiton’s Dream a Dream Homestead. This is were I have been running dogs from for the past three seasons. Up unitl last Sunday, I lived upstair in the big building. Our new house is 5 miles north and I can get to the kennel by road or trail. A few years ago, if you asked Larry or I would we ever move to Alaska, the answer would have been “no.” Not only did we move here, we built a house, and I am running the Iditarod again :) We are having a blast moving along the road of life – awesome!
The house we are building in Willow, AK is coming along very well. Movers are coming in a few days to ship our stuff. We should be moved in by November.
Today I sign-up for the 1st race of the season (McGrath Trail Mail 202) starting Dec 18th. This new/old race has some interesting history. http://www.mcgrathmailtrail202.com/
Exciting stuff!!! Stay tuned.
After 5 years in the making, the documentary chronicling my journey is finally live! You can get BANNER ON THE MOON on iTunes, Amazon, and Google Play.
The film links are on listed the Documentary Page
You can go to each distributor and search for the film name.