Save One Life

Back in the Saddle Again

It was a beautiful, crisp summer day on the North Shore of Boston to get back in the saddle again—the bike saddle! Part 2 of Wheels for the World today showcased a thrilling mountain bike ride through Willowdale State Park in historic Ipswich, Massachusetts: historic for hemophilia, for it was here in the 1600s that the first family in the New World with hemophilia was discovered. The Appleton family farm, owned by Oliver Appleton, was just down the road from the entrance to the state park, where we would ride for two hours, through fields, dodging trees, skidding over gnarly roots, and bumping over rocks.

Well, some of us did. We had a small group of about 10 riders, including me and Doug. Also present were: Chris Bombardier, Save One Life’s executive director; AG, mom of a child with hemophilia; Justin, a person with hemophilia who came all the way from Florida to ride! Rich Vogel, long-time friend and community member, from New Jersey; and more! Our goal was to ride, have fun, honor Barry Haarde’s legacy, and raise money for Save One Life.

Oh, and complete a nine-mile route through some really exciting and wild woods! Problem for us was that I have not been on a bike in 18 months, and have not mountain-biked in about 5 years. Doug has only ever been once! I bought him a new bike for his birthday this past January, but turns out it was a hybrid and not a real mountain bike. He and I suffered through about 2 miles before bailing. And I had one crash when I couldn’t stay on the trail after bolting over some rocks and came crashing down a hillside. Luckily, no one was around to see that, only the bruises and scrapes told the story. Justin had a better story: he broke his bike, but kept on riding with no seat!

The group had a great time, and it was wonderful to be with our community members again. After the ride, we gathered at the True North Brewery, where we stayed for a few hours, swapping stories of raising a child with hemophilia, thoughts about new treatments, joint pains and back aches!

Hemophilia has brought together so many great people, all focused on a great cause: helping children with hemophilia in poverty in developing countries. Getting back in the saddle, even with a few mishaps, was worth it all.

There’s still time, until October 1, to participate in Wheels for the World! Go to the Save One Life website to learn more. Get back in the saddle!

We Ride to Remember

“They shall grow not old, as we that are left grow old: Age shall not weary them, nor the years condemn. At the going down of the sun and in the morning we will remember them.” — Laurence Binyon, British Poet

Wheels for the World in Providence, Rhode Island

They rode in the bright sunshine and heavy heat in Providence, Rhode Island, to remember a special person in the hemophilia community, Barry Haarde, and to raise funds and awareness for those with bleeding disorders in developing countries, who still suffer from untreated bleeding. It was Save One Life’s second annual Wheels for the World in conjunction with New England Hemophilia Association. About 25 riders gathered—one family from Pennsylvania!— to share the joy of riding, and gratitude for having treatment in the US to stop bleeding.

For me it was only my second hemophilia event in over two years to attend! I had just returned from Kilimanjaro, so decided to sit this one out and attend as a volunteer—though there was little to do! The team from NEHA and Save One Life had it all under control.

A special guest was Emily “Weez” Cobb, Barry’s sister, who attended with her husband Billy, to say some words about Barry, and what this ride meant to her. Barry, as most people in the community know, was a person with hemophilia A and HIV, who also had a permanently contracted knee. He created the idea to ride his bicycle across the US to raise awareness for those affected by hemophilia and lack of treatment in developing countries. He also did it to honor the fallen: those with hemophilia who were killed by HIV, from infected blood products and treatment in the late 1970s and early 1980s. Barry would eventually ride six times across the US over six years, raising more than $250,000 for Save One Life.

Sadly, he took his own life in February 2018, which stunned the country. He had overcome hemophilia, HIV and hepatitis C, but not mental health issues. He was beloved by the community, and Wheels for the World honors his character and commitment.

Weez reminded us all how much Barry wanted to show the younger generation what was possible, despite hemophilia and all its complications. She also said how important it is to remember those who are no longer with us. Wheels for the World keeps memories of Barry alive, and continues his cause, for which she and her family are grateful. Weez has known much loss: her two brothers and mother all died within a few years of one another; her 17-year-old daughter Patty died in a car crash; and her first husband died also of HIV, as he also had hemophilia.

Remember those who are gone “helps with the grieving process,” she said. And no matter how many years go by, people still grieve.

This year marks the 10th Anniversary of Barry’s first ride: over 3,000 miles from coast to coast.

At the end of this ride, which was about 28 miles, Save One Life and NEHA  provided food and drink at the Narragansett Pub, where we had some surprise news for everyone, especially the Cobb family: my boyfriend, Doug Mildram, has volunteered to re-create Barry’s first ride, from Portland, Oregon to Portland, Maine, in 2023. Seven weeks of riding, at 100 miles per day. Not many people could accept this challenge, but Doug has been training all his life. Doug had met Barry, and they discovered they both worked at Hewlett Packard, and both love cycling. Barry inspired Doug, as he inspired me, and inspired everyone he met.

We hope our community will welcome Doug along the route from coast to coast with open arms as they did Barry, who we will honor with this ride, and to continue to raise funds for families in poverty overseas.

Thank you NEHA and Save One Life for an outstanding event! Thanks to Weez and Billy for flying up to join us—see you next year, when Doug comes riding into Portland, Maine, to celebrate another Wheels for the World, and to remember our beloved Barry.

Compassion in the Canyon

I learned an amazing statistic Sunday: over 7 million visitors come to the Grand Canyon each year, but only 1% ever hike on any of its many trails.

The Grand Canyon is one of the eight wonders of the natural world, and the largest canyon in the world. It was formed over millions of years through the constant erosion of the Colorado River, which snakes at its bottom. The Grand Canyon is 277 miles long, up to 18 miles wide and attains a depth of over a mile, according to the National Park Services. People die there each year, mainly from heat exhaustion. When we hiked Sunday and Monday, temperatures were a worrisome 107°.

So what made us, a groups of members of the hemophilia community, go down into the Canyon?

It was a fundraiser to help Save One Life, the international nonprofit I founded 21 years ago. Our group consisted of 20 hikers, including five people with hemophilia, a few parents, friends, some pharmaceutical employees and some specialty pharmacy reps. Some people I knew, others I was just meeting for the first time. Some of us are avid hikers, and some almost never hiked.

Jeff Salantai with girlfriend Natalie; Jeff and Laurie hiked Kilimanjaro 11 years ago!

The heat was intense, like being in a microwave. The great thing about Arizona heat is how dry it is. Once you hit even a tiny bit of shade, you immediately cool down. And fortunately, the trail offered spots of shade as the canyon walls towered above us and protected us from the sun.

People hike for all kinds of reasons. One of them is to see the canyon from a different perspective, to appreciate nature’s beauty from an angle most people never see.

As I hiked along, I compared this idea to being in the hemophilia community: we see life from a different perspective. Constantly aware of pain, battling pain, trying to reach goals despite the many obstacles, seeing beauty in life despite the struggle, and most of all, depending on one another with compassion.

Braxton gets an infusion from dad Derek Nelson

Compassion, which in its Latin roots means “to suffer alongside of,” was the hallmark of our hike: some people really struggled in the heat and steepness of the hike, which took hours and hours. I myself, though constantly working out and hiking, also struggled at times with an inflamed back. Community members and teammates (our team was the “Bleeding Hearts”) stayed by those who struggled to encourage them, help them take one step at a time, hydrate them and ensure they made it. It was really beautiful to see.

Compassion is what Save One Life offers too, to those with bleeding disorders in developing countries. When Gene Taylor, the founder of iConquer, the outfitter that organized this excursion, complimented us on Save One Life’s work, I told him how our community is overflowing with compassion. Save One Life merely gives an outlet to extend that compassion to the world’s children with hemophilia who suffer.

Helping each other on the trail

We “one percenters,” as they call us, go into the canyon, on one of the hottest days, no doubt to see what we are made of, but also to see how much we share compassion with others: to function as a team, as a community, to those in need. It’s a beautiful thing to behold, in one of the most beautiful places on earth.

Thanks to Gene Taylor and iConquer, to Karen Serevitch at Save One Life, and to all the hikers who traveled so far to participate.

“It’s not the mountain we conquer, but ourselves.” Sir Edmund Hillary

We did it!

Mountain Madness

The pandemic rages, winter is here; in the Northeast, it’s dark by 5 pm, gloomy, cold. It’s a great time to snuggle up with loved ones after a week of vacation, to watch a movie at night. On social media, people are recommending The Crown, The Last Czars (little bit of hemophilia in there) and even The Ripper.

Here’s a great family movie that I’d recommend: Bombardier Blood.

This is the movie about Chris Bombardier, a young man with hemophilia B, who set out to summit the seven highest mountains on each continent. North America, South America, Asia, Europe, Africa, Australasia and Antarctic: different heights, climates and topographies. Although expensive, time-consuming and death-defying, Chris did it. And Bombardier Blood captured his journey, from training to traveling to hiking. It will make you sit in awe, cry, laugh and be so proud.

And if you look at my flat-screen collection of documentaries, there is a definite theme: mountain madness! I love mountains, have done a bit of climbing myself, and follow the history of mountain climbing, including the Seven Summits.

Put Chris’s accomplishments into perspective, ignoring that he has hemophilia: of the 108 billion humans who have ever been on this earth, less than 500 have ever completed the Seven Summits. And one of our own, Chris, has done it.

And I’ll add that he did it as a fundraiser for our nonprofit, Save One Life, and to highlight the hardship of those with bleeding disorders in developing countries. That alone is worth the watch.

Laurie Kelley in the Andes: “The mountains are calling, and I must go”

Bombardier Blood was made by Believe Ltd, founded by Patrick James Lynch, another man with hemophilia. And originally funded by Octapharma, a European company that manufactures clotting factor wilate® and nuwiq®.

I’m partial to superhero movies. I love the Marvel Universe and especially love X-Men, the Avengers and even Deadpool (despite his dreadful language). But in Chris we have a real-life superhero. And he is now executive director of Save One Life. His journey to new summits continues, all to benefit our family in need overseas.

Watch it, buy it. About 20% of proceeds go to Save One Life. A win-win for all!

Available on iTunes and Amazon Prime.

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