The second day of the World Federation of Hemophilia Congress wrapped up at Disney’s Epcot Center, the symbol of unity on Earth. As I walked around the park and visited the different cities of the world with my hemophilia family it made the world seem like a very small place. In a sense the world meeting has been a lot like Epcot. Today I made more connections to people from various walks of life.
For those of you who don’t know my personal background very well, I wasn’t always a mountaineer and adventurer. I was a scientist for many years and worked in medical research, specifically hemophilia. In my time with the University of Colorado I learned how to operate a manual coagulometer which can be used to diagnose hemophilia. My first trip to Kenya and subsequent climb of Mt. Kilimanjaro in Tanzania really started because I was asked to help set up a lab there. That’s where my life changed after I saw what hemophilia really was. My blood brothers suffering and struggling. Ever since that trip I wanted to find a way to use my unique circumstances, as a bleeder and scientist, to help in developing countries.
Today I was honored to meet with the Novo Nordisk Hemophilia Foundation (NNHF) and specifically Shady and Susanne. The NNHF does exactly what I have wanted to use my skills for. They are committed to building infrastructure, educating healthcare providers, empowering patients, and encourage advocacy within the hemophilia community in developing countries. I contacted the organization earlier this year and I was so excited to meet them! We had a great meeting and I was inspired by their enthusiasm to make a difference. I really hope to work with them in the near future and I hope you all follow them on Facebook and check out their website.
I also want to dive a bit deeper into my post earlier about my Save One Life luncheon and the story I shared. Save One Life is an organization that is very close to my heart. I serve on the board and the founder Laurie Kelley has been an incredible mentor for me for the past five years. This is the first meeting where I was able to connect to the beneficiaries that we serve and it was powerful experience. Every story tugged at my heartstrings and I was reinvigorated to work harder and do more. I was asked to provide a few words of encouragement during the lunch but I found that incredibly ironic. I felt like the stories of our guests gave me encouragement and drive. I left the meeting with a new energy after an already full week of the conference. Once again, if you haven’t heard of Save One Life I really encourage you to check out their work on Facebook and their website.
As I watched the fireworks light up the figurative world of Epcot tonight, I couldn’t help feeling sentimental. Although we have a couple more days of meetings I always want to keep this connection I feel to our community. Hemophilia literally runs in our blood and I couldn’t imagine my life without it.