Celebrations and Struggles

April 17 is World Hemophilia Day, which was celebrated worldwide this past week. It’s a great chance for hemophilia nonprofits to garner public attention and educate about the disorder. This day was chosen as it is the birthday of the founder, Frank Schnabel, who is commonly referred to as Canadian, because the World Federation of Hemophilia is located in Montreal, but who in fact was American! Before we get all proud of that fact, he moved to Canada to get affordable health care. It’s taken his organization, the WFH, decades to move from a family run nonprofit to a more professional, world class nonprofit, but it has done so! This should give hope to the many struggling hemophilia nonprofits in the world.

Speaking of struggling, the Boston Marathon, also world class, takes place Monday, April 21, not too far from me. I had the pleasure of dining Saturday evening with Steve Petty, a Bayer rep from Utah, who shares my passion for adventure sports and the great outdoors, although Steve lives it to an extent I do not. He is in town to run the Marathon! I thought we would have a nice 90 minute dinner, but we enjoyed over three hours chatting about everything from extreme running, to religion, to life’s mission and purpose, to children (we each have three), to hemophilia in the developing world. Steve would like to come with us sometime on one of our missions overseas, most likely for one of our camps. Steve is also a volunteer Search and Rescue ranger in Utah… pretty amazing! He also volunteers a lot for the hemophilia camps, leading young men with hemophilia to do things they didn’t think possible, like rafting, kayaking and rock climbing. The most amazing, jaw-dropping thing I heard all week was that he beat Dean Karnazes, the self-proclaimed “Ultramarathon Man,” in a race!! (Check out the book by the same title, which is fascinating!) Good luck, Steve!

We lost one race today: Gary Yanga of the Philippines, a beautiful young man with hemophilia and a severe GI bleed, died yesterday. We had been trying hard to keep him going with donations of factor. It wasn’t enough. Life is so harsh in these countries, despite the best intentions and skills of his caring doctors, and volunteers, like Father Don Kill, and our program. We offer our condolences to his family over this loss, and it will spur us to continue to work harder for those who still need us. Factor donations are tight, and there is much less to give. We are grateful for any donations, and for those who do pull through, and for those patients whose lives are made a little easier from these donations.

Great Book I Read: Shackleton’s Way by Margot Morrell. If you like reading about extreme adventure, like I do, you will love this book! The story of Sir Ernest Shackleton, one of history’s greatest polar explorer, is world famous and as riveting today as in 1914, when the story unfolds. His Imperial TransAntarctic journey was to have him be the first to traverse the entire Antarctic on foot. But things didn’t work out that way. What happens is a tale of survival and extraordinary leadership under the worst conditions on earth that seems unbelievable: the ship encased in ice and sinking, leaving 27 men stranded; striking out in three life boats for a week; landing on remote, inhospitable Elephant Island; then, the greatest boat journey in history, Shackleton and two other men travel 800 miles in the open, frigid sea to another island, and then stagger miles on foot to finally approach a whaling station, and then organize a rescue for the stranded men on Elephant Island. Morrell tells this tale of Shackleton’s remarkable leadership in business terms: how you can apply Shackleton’s philosophy and revolutionary leadership to your business. This story can make you a better leader in anything you do. Incredible tale that you will never forget! Four stars.

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