REACHING BEYOND THE CLOUDS
Bridging the Gap
There are 7,000 known rare diseases. Unfortunately, the people who suffer from these diseases often go for years, even lifetimes, undiagnosed because there is no specific system in place to connect the people with the doctors and treatments that may be able to help. Many national health-advocacy organizations have implemented programs to bridge this gap, but even in this age of social media and networking, these are not proving effective. I know, first hand. It took me 14 years of searching before I stumbled onto the fact that I am one of the 30 million Americans who have a rare disease. Something must be done to accelerate the awareness of rare disease-resources.
Extraordinary Power of Rare:
After all the years of doctor visits, medical tests, and research, I was shocked to learn that there had been an answer the whole time, just no conduit to lead me to the people who had it. I became obsessed with finding out what I could do to help fix this disconnect. I contacted the National Organization of Rare Disorders (NORD) and told them of my plan. Through the power of the media, I was going to shine the light on myself and NORD; and thus, start building the bridge that would connect not only the general public but also the medical and biotech communities to rare disease resources.
Going Public: Media, Speaking, Book, and Documentary Film
At the age of 48, with almost no mountaineering experience, and a rare, incurable and life-threatening disease, I decided to climb Mt. Everest. I was told it was impossible, but I proved them wrong. On May 23, 2010, after 51 days of working my way up the mountain, I stood at the top of the world holding a NORD Banner, and became the 40th American female to summit Mt. Everest.
This created both national and international media coverage (ABC, World News with Diane Sawyer, NPR, newspapers, magazines, awards, etc.) But it was not enough. I started speaking to all kinds of organizations from medical to political. But it still was not enough. So I wrote and self-published a book, REACHING BEYOND THE CLOUDS: From Undiagnosed to Climbing Mt. Everest. But I still was not satisfied. I needed to do something extraordinary to bring rare disease out of the darkness and into the light, and to show how adversity can elicit hidden strength.
So once again, I reached for the unreachable – to become the first female to summit Mt. Everest and complete the 1000-mile Alaskan Iditarod Sled Dog Race, two of the world’s most extreme adventure sports. On March 22, 2015, after 13 days, 11 hours, 19 minutes, and 51 seconds, I crossed the Iditarod finish line with the NORD banner that I held on the summit of Mt. Everest! On March 18, 2017, at the age of 56, I across the finish line again earning my second Red Lantern Award for Perseverance.
In an effort to bring rare disease awareness to both national and international audiences, my husband and I have produced a feature-length documentary film, Banner on the Moon.