Tuesday is “Giving Tuesday,” an annual event when Americans will donate up to $550 million to their favorite charities. It’s essential that this Giving Tuesday, on December 1, 2020 be as successful as last year. COVID has wreaked havoc with the economy, and people have much less disposable income. The unemployment rate is at 10%. But the needs are even greater. According to Project Bread, more than 80%, or 4 in 5, food banks are serving more people now than they did a year ago.
And while the pandemic has hit America hard, overseas, developing countries are struggling even more. That’s why I give to Save One Life, the international nonprofit I started in 2001. We support children with bleeding disorders who, even in the best of global health times, suffer cruelly. They often lack access to injections of factor, which would give them a normal life. This medicine is readily available in the US and other developed countries, but we forget about those in need who cannot get this medicine.
Save One Life offers one-to-one sponsorships with a child in need; scholarships for college or vocational school; microenterprise grants to those who wish to start businesses to sustain themselves, and camp funding for children to have some joy in their lives. And of course, medicine—factor to inject into their bloodstream to replace the missing protein that makes their lives painful and short. Look at our stats so far this year!
While we’ve been successful despite the challenges, each day we learn of more children in need. Help us to help them. Consider giving to Save One Life on Giving Tuesday. Visit our website to see if one of the beautiful children there speaks to your heart—they are waiting for a sponsor. I sponsor 17 myself! Or give, any amount, to our mission, so we can continue our wonderful work.
And… just give. To Save One Life, to an animal shelter, to a food bank… find your cause, and act. Many organizations need your support, so they can support those most in need.
A bone to the dog is not charity. Charity is the bone shared with your dog, when you are just as hungry as the dog. —Jack London
The pandemic has put a halt to in-person fundraisers for nonprofits like Save One Life, and yet we are extremely dependent on these events for overhead revenue. We receive program funding from grants, but for regular overhead, like salaries, rent, utilities and services, we often have to raise our own funds. Save One Life is starting to be known for its “adventure” fundraising, like cycling, mountain climbing and even hiking!
This past weekend we honored Barry Haarde, a man with hemophilia and HIV who cycled across the US six times in as many years, raising over $250,000 for Save One Life. Barry passed away in February 2018, a huge loss personally and professionally to us. He was one of a kind, a deep, sensitive soul with a heart as big as the state he lived in, Texas. We decided to first do a bike ride in 2018 to remember him, and now we continue that tradition each year to honor him and his favorite cause, helping children with hemophilia in developing countries. Save One Life was one of his top favorite charities.
Our “Wheels for the World” went virtual this year, and we opted for an in-person cycling ride (with proper masks and social distancing) starting from historic Ipswich, Massachusetts. We had eleven riders participate on Saturday to do 23 miles, including an 11-year-old! Pretty gutsy!
With lots of water and donuts, we headed out into the crisp, New England air. The course took us through the lush green farmlands and horse stables that populate this area, and past solid, magnificent colonial-style homes, some dating back to the 1600s! Along the route a small grey vole darted madly across the road, just missing my tires; a white-tail deer stood like a statue in a golden field, ears alert like radar shields as it watched us pass; and sadly, I saw a very flat chipmunk, a victim of the waning sun and probably extra body fat as he readied for hibernation.
We all returned together, and after congratulations (no hugs!), we went to True North Ale House for a complimentary beer, or in our case, blackberry Izzy drinks. I especially enjoyed chatting with Oliver, a tall young man who just started working at uniQure three weeks ago, and who is responsible for making the viral vectors into which the human gene for factor VIII is placed. He is working on the cure for hemophilia and we surely hope he is successful!
On Sunday, we reconvened on another bright, warm day, with a smaller group. I was also supposed to ride this one, 62 miles, but had woken up Friday with a back spasm. I worked it out, and was able to ride the 23 miles (which was actually 27 for us, as we got a little lost) but today, it came back with a vengeance. No way could I do 62 miles when it felt like there was a little ball with spikes sitting in my lower right back. I showed up in my gear, ever hopeful, but bailed at the last minute, my back sending warnings. I watched the six riders shove off. Jodi, Karen and I were waiting for maybe two more, and after 20 minutes a car pulled up. Was it Dan Leonard of uniQure, or Scott?
I watched as a handsome man got out of the car and approached. He said, “You don’t recognize your own brother?” My brother! All the way from the Springfield area, two hours away. I hadn’t seen him in over a year and hadn’t known he had registered! Imagine if I had not had the back spasm, and took off on the 62-mile ride. I might never have seen him that day. Jim and I hugged and chatted, and then Dan Leonard arrived. So now they both had someone to ride with. They opted for the 23 mile one that we did yesterday. And off they went!
The day was successful and I know we raised a lot of money from the wonderful sponsors, and from the dedicated riders. I didn’t even know some of the riders—two from Worcester, Massachusetts—who were college student and friends of someone in our community. They loved the ride and pledged to participate next year.
In fact, everyone had a great time. I heard from quite a few people that this year had been so strange, that they had not had a chance to ride outside at all. Injuries, work, childcare issues, COVID… this fundraising ride gave them the boost to dust off the bike (my brother’s literally had cobwebs on it!) and get out in the glorious autumn sunshine to enjoy the beauty of this state. We made new friends, reconnected with old friends, and helped Save One Life.
As Doug and I drove into downtown Ipswich, to get a bite to eat on Saturday, a tall, lean cyclist pulled right in front of us, not even staying to the side of the road, but directly in front (legally fine). I was struck by his position and body type. Incredibly, this rider had Barry’s long torso, and thin, powerful legs. The way he held his handlebars and leaned over… I had ridden enough with Barry to know his stance anywhere. It was as if he materialized to ride with us once more time…. and then he was gone. But I managed to snap a photo.
His spirit is always with us, challenging us to be better versions of ourselves, and leading us into a future where every child with hemophilia will have access to medicine. That’s why we ride, and that’s what we work for at Save One Life. RIP Barry. And thanks to everyone who sponsored, rode and supported Wheels for the World 2020!
Remember the 2014 movie “Wild”? About a woman, self-named “Cheryl Strayed” (as in strayed from the path), who decided to hike the Pacific Crest Trail from California to Oregon, a journey of 1,100 miles. Recently divorced, her life in emotional tatters, the trip is supposed to help her figure out who she is and where she is going in life. With no hiking experience at all, the journey is filled with danger and discovery. The movie received positive critical reviews.
I was reminded of the movie this weekend after driving to Connecticut, to a trailhead on the Appalachian Trail (AT), to catch up with a young man with hemophilia who is now undergoing his own “Wild.” Will Addison is hiking 2,200 miles, southbound (“SOBO”) from Maine to Georgia, to raise money for the nonprofit I founded, Save One Life. That in itself is astounding. But consider this: he is not even 20, and is traveling solo.
Doug and I arrived at the trailhead around 5:30 pm, and immediately saw members of our local community, there to cheer Will on. Then Will’s parents arrived, David Addison and Victoria Kuhn, and their daughter Grace, Will’s twin sister, all from Maine. These are true outdoors people, who love camping and adventure. They came fully prepared to restock Will with food and supplies.
For Will, this was day 44, and mile 718. We parked by the side of the road, waiting for Will to appear. There were freshly baked chocolate chip cookies from Victoria, beer, and lots of laughs. Some of us came equipped to camp overnight with the Addison family, and to see Will off in the morning. We learned from Victoria that Will would not arrive till about 9 pm, or later, so we decided to hike the 1.5 miles on the AT ourselves to find the camp site, and to set up camp. It was a lovely hike in the 90° heat, shady and moist. My biggest fear was the plethora of Virginia Creeper everywhere lining the trail. I am highly allergic to this plant: even a brush of it against my skin will leave a rash like a second degree burn for two straight weeks. And I was wearing shorts!
Once at camp, we quickly set up tents, spread out our sleeping gear, and then hiked back again to wait for Will.
Around 9:30 pm, as we milled about, watching the magical and mesmerizing green flashing lights from the multitude of fireflies deep in the woods, out of the forest, out of nowhere, came Will! He literally burst into our little latern-lit gathering at the edge of the woods as if it was just a little stroll; in fact, he had just completed his longest day, at 28.5 miles. Just imagine… while carrying a pack weighing about 30 lbs.
He looked great. He is tall—6 feet 1 inch—with blond hair growing longer by the day, serene brown eyes, and lanky legs. He immediately sat down and began eating! We had a lovely visit with him and the community members, who peppered him with questions about his trip so far. Victoria, ever resourceful, brought a Save One Life sign, and we took a group photo. And we all signed his banner, which he is bringing with him to Georgia, the way Chris Bombardier did when he accomplished each of the Seven Summits. This sounds like a trite thing, but when you are limited it what you can carry, and you are traveling for 105 days solo, every ounce matters. It’s a huge display of respect and commitment for Will to carry the banner.
We had cheesecake in honor of a milestone birthday for the twins, just two days before!
By 10 pm we had to call it a day. The visitors drove off, and the final team hiked to camp: Victoria and David, daughter Grace and son Will, Doug and I, and Paul, father of a son with VWD. Now it was dark, with fireflies twinkling like little green stars above, so we used our headlamps to light the way on the trail.
Once at camp, we stuffed our food into a bear box, then quickly got to sleep in our sleeping bags on the ground in the woods, serenaded by the hooting of a barred owl that eventually flew off in search of prey.
Morning came fast, as birds lit up the woods in chorus at 5:30 am. By 7 am we had packed everything and readied for breakfast. Will showed me how to use my “Pocket Rocket,” a gas-powered cooking device. As I am a danger in a normal kitchen with a gas stove, this 5-inch device that looked like a little bomb scared me to death. But Will was a good teacher: I boiled water for tea successfully.
This was a great time to ask Will about his journey so far. He is young, only a teen, but mature beyond his years. Still, where and how did he get this idea and ability? He is an athlete, participating in track at school, and soon to start cross-country track. He is a Boy Scout, “Third generation!” Victoria proudly added, a program which no doubt has provided him with the training and skills needed to camp out for 105 nights straight, and get him all the way to Georgia. He infuses often, every other day, to ward off bleeds. He has zero body fat (and lost about 10 pounds on the trail so far) but has muscle tone, so he is in excellent shape. He has an outdoor-oriented family, so the woods are not new to him. He seems to thrive in them like a true wild child!
He’s raising money and awareness for Save One Life, our international child-sponsorship organization. Why Save One Life? He wanted to make a difference in the world, beyond the borders of Maine, his home state. I sense he wants adventure in the great, wide world too. Perhaps one day Will and I will climb Kilimanjaro together, and he can also see our families in Kenya and Tanzania, how they struggle and how much they need our help. His eyes lit up at this idea.
Will spends most days alone on the trail, quiet, thinking, listening to music through his iPod. It can be lonely. He is only a kid, really. How does he keep it together? My most important question was this: what have you learned about yourself these past 45 days?
He thought for a moment, while munching on a baguette. “I think I’ve learned that I am more independent than I thought I was.”
Powerful statement. As parents of children with hemophilia, we want our children to be independent. This might be an extreme example, but a teen who can hike an average of a marathon each day for 105 days solo, while needing to infuse every other day, is beyond impressive. It’s stunning. He needs abilities like discipline, goal setting, planning (“He planned everything himself,” Victoria adds), preparation, focus. Independent? More than most adults I know. This young man, William Addison: watch for him. Donate to his hike’s cause, Save One Life (he wants to reach $10,000!). Follow him on Facebook. Learn some things from his amazing journey. He’ll be hiking till September.
William Addison is the type of young person we want to see more of in the world–with or without hemophilia. He is the future… I hope, with all my heart.
Wild child, full of grace, savior of the human race…. “Wild Child,” The Doors, 1969
Chris Bombardier…. have you heard of him? He’s only the first person in history with hemophilia to have summited Mt. Everest (and the entire Seven Summits) and this is the third anniversary of his historic climb. Incredibly risky, incredibly rewarding. And he is now executive director of the nonprofit I founded, Save One Life.
Chris has dedicated his life to helping those with bleeding disorders in developing countries. He even put his life on the line, to raise money and bring awareness of the plight of those with lack of access to factor.
Now all he is asking is for us to climb! Not Mt. Everest, but your stairs, in your home. Climb your stairs 29 times, to represent Everest (29,029 feet), donate $29 to Save One Life, and challenge 9 of your friends! So we are climbing for Chris (to honor his climb) but really climbing for the kids who suffer.
So today I did it! 38 steps, 29 times. After after I did that, I did it about two more times. And I’m going to keep doing it this whole month of May. How about you? Enjoy this 2-minute video to “Holiday” by Green Day, get motivated, and climb! I don’t know about you, but being in quarantine has not helped my waistline. I’m used to being super active. This will help! Learn more at www.saveonelife.net!
When our team was dividing up who will represent Save One Life at various showings of “Bombardier Blood,” the incredible movie about Chris Bombardier’s Seven Summits Quest, I jumped at going to Utah. Utah is one of my favorite places: drenched in southwest colors of red and yellow, with soaring mesas and fins, and deep, rich canyons, it’s an adventurer’s dream. It seemed to fit the message of the movie, too: go out. See the world. Climb, hike, walk, smell fresh air, dream, do.
After spending a week exploring Antelope Island, Moab and Zion, I headed north on I-15 and reached Salt Lake City. The Utah Hemophilia Foundation’s executive director Scott Muir was there to greet me. And not only greet me, but to give me the gift of his paintings, bound as photos in a hardcover book! All the paintings are of Zion National Park, which he well knows I adore. Scott is a talented photographer and artist.
And apparently, executive director! We had a huge turnout for the event. About 150 or more families arrived to socialize, have dinner, enter raffles and engage with the various pharma and specialty pharmacy vendors. I was so happy to meet up with long time friends, colleagues and Facebook friends (some of whom I have not yet met in person). There were so many children, and while you might think their presence might disrupt a movie, the children were as good as gold.
I gave a few words before the movie started, and let the audience know this amazing stat: out of the 108 billion people who have ever walked this earth, less than 500 have ever accomplished all Seven Summits. I’m not sure you can easily even measure that! The audience was hushed as the movie began, and for 90 minutes, were riveted to the screens.
After the movie, one 14-year-old asked me a very leading question: how did Chris keep his factor warm on the mountain? “Why don’t you ask him yourself?” I replied. His eyes lit up! Chris must seem like a hero to so many, and thus, out of reach. But he is very approachable. The young teen was thrilled to get Chris’s email address, and I had to ask him: was he interested one day in doing mountain climbs? He nodded his head vigorously and smiled! Come join us, I invited him!
And coincidentally, Save One Life will be hosting a three-day hike to the bottom of the Grand Canyon in 2020!
Bombardier Blood is about making dreams come true, and if you can see it at your local chapter, please do! You may believe anything is possible.
Thanks to Utah Hemophilia Foundation for hosting this movie, and to all who sponsored the event. Special call out to Octapharma, which sponsored Chris’s last two and most expensive climbs, and for daring to take a risk on a young man with a big dream. Sometimes the riskiest adventures yield the greatest joys and successes!
Bombardier Blood was created by Believe Ltd, and is now produced by Alex Borstein. It showcases not only Chris’s climbs but also the disparity of treatment in bleeding disorder between developed and developing countries, being addressed through the work of Save One Life.
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