Barry Haarde

Doug Did It!

My boyfriend Doug is such a go-getter, such a team player, that I would always tell people, You want something done? Doug’ll do it. And I volunteered him for various tasks at Save One Life, which he cheerfully accepted and did. One year I even made magnets and lapel buttons for the Save One Life team that read “Doug’ll Do It!” as a joke.

It’s no joke now. Doug did it! He cycled 3,784 miles coast to coast—from Portland, Oregon to Portland, Maine, arriving Thursday, October 5 on a grey and windy day in Maine, to dip his wheel in the Atlantic Ocean. It was an incredible feat, for someone who is 66, and only took up riding nine years ago, when he first met me. Combined, his efforts and those of our community around the country who participated in the Wheels for the World campaign, raised over $230,000 to support the mission of Save One Life, the nonprofit I founded 21 years ago. It was our biggest fundraiser ever.

Doug is inspired by Save One Life’s mission, to give direct financial support and medicine to those with bleeding disorders in developing countries. Save One Life assists over 1,200 people who live in poverty, in India, Pakistan, Nepal, Kenya and ten other countries. It offers direct sponsorship, college scholarships, microenterprise grants, camp support and millions of dollars worth of blood-clotting medicine.

But Doug was also inspired by an incredible individual: the late Barry Haarde.

Barry was an avid cyclist with hemophilia who completed six—six!—long distance tours over six years to raise money for Save One Life. From coast to coast, with his final one dubbed “Call of the Wild” from Dawson Creek, British Columbia to Anchorage, Alaska. His tours totaled over 20,000 miles and raised over $230,000 for Save One Life!

What was remarkable about his achievement was that Barry had hemophilia, HIV and a contracted knee joint… health issues that would stop most people from considering this audacious ride. But Barry was not most people…he was driven by memories of the brother and brother-in-law he lost to hemophilia and HIV, and all the friends in the community lost to HIV. In addition, he knew firsthand the pain suffered by those in developing countries who often lack access to blood-clotting medicine.

Doug met Barry twice, and both learned that they loved cycling, both worked at Hewlett Packard, and both admired the work of Save One Life. Doug was in awe of Barry. Barry passed away in 2018, and no one since has dared to fill his cycling shoes. But Doug’ll do it! And he did. I’m so proud of Doug: the time he invested in training all year, the time spent away from me and home, his dedication and discipline, and his accomplishment.

Thanks to all who donated to this cause, thanks to our major sponsors, Sanofi and CVS, and for all the prayers. Through the Rockies, the cornfields, the highways and hills, he was safe and is now home. And Save One Life continues on, to help the needy.

Yesterday was a celebration of his accomplishment and a surprise announcement! We have a new volunteer for next year! James’ll do it! James is from Texas and was a friend of Barry’s. So the torch has been passed and we wish James much success in 2024!

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.

Celebrating Life at NHF

With my heroes Vaughn Ripley and
Barry Haarde
 

The beautiful speech given at NHF by chair Jorge de la Riva stressed caring, and the dangers of indifference. Jorge, the father of a teen with hemophilia, deftly drummed home by a quotation from Holocaust survivor Elie Weisel, whose book Night, I just reread a few weeks ago:

 

“The opposite of love is not hate, it’s indifference. The opposite of art is not ugliness, it’s indifference. The opposite of faith is not heresy, it’s indifference. And the opposite of life is not death, it’s indifference.” ― Elie Wiesel

 
How appropriate to use Weisel to remind our community that if we do not watchdog our own interests, we may be hurt–again. And this is why the theme of this year’s meeting was “Nothing about us, without us.” More and more, NHF (and HFA and other groups) are steering the interests of the community, from research, to data collection, to blood supply safety, to genotyping. We’ve come a long way in 20 years, and paid a hard price.
 
Derek Nelson and Chris Bombardier

Val Bias, CEO of NHF and person with hemophilia, gave a speech on the many and exemplary accomplishments of not only the NHF but of various groups and individuals in our community. During the videos shown, I thought instead of two people who have done extraordinary, history-making things in our community, just this year—Chris Bombardier, the first person with hemophilia in the world to conquer four of the seven summits. And Barry Haarde, who has now ridden his bike three times across America, to bring attention to the public of hemophilia and HIV. It’s nice that we showcased who we did, but Chris and Barry volunteered weeks of their lives to do something no one else has ever done, which are extraordinary feats even without hemophilia!

We did acknowledge them, at the Save One Life Celebration on September 17 at the Intercontinental Hotel in Washington DC, just before NHF kicked off. It was a lovely event, with about 77 attendees, including donors and sponsors. We honored special people who have helped make Save One Life a success so far:

 Over 1,300 people with hemophilia in 12 countries who live in poverty supported directly with financial aid 80 scholarships to foreign individuals since 2012 8 micro enterprise grants in 2014
Over $1.5 million in direct aid!
 
Laurie with friend and colleague Val Bias, CEO of NHF
 

All this goes to people who live on the fringe of life, the poor, the suffering, in places like India, Zimbabwe, Pakistan and Honduras. And we honored Chris and Barry who have raised so much money for us. And our Inspiration Award went to Mark Skinner, former NHF president, WFH president and current WFH USA president (and personal friend) who has inspried me for many years with his brilliant insights, his compassion for the poor and his endless volunteerism. Accepting the award for him was Mike Rosenthal, executive director of WFH USA. We were surprised and pleased to see Doug Loock in attendance, who, back when he worked for the American Red Cross in 2000, gave us our first grant, and was the first supporter to help us!

 

Thanks to NHF for allowing us to hold the even at their event (thanks, Val!); and to ASD Healthcare (thank you, Neil  Herson!) for being our major supporter of the event. Also thanks to Baxter, Novo Nordisk and CVS Health for supporting the event.

 
Best news of all? We picked up 30 more sponsored children as a result! 
 
If you want to learn more or support a child, please visit http://www.saveonelife.net
 
 
 
 

 

Laurie with Neil Herson, president of ASD Healthcare, accepting award for Chris Bombardier
Usha Parasarathy accepting award for Program Partner of Year
 

Great Book I Just Read
Blood Meridian [Kindle]
Cormac McCarthy

The author of No Country for Old Men does it again. This is a masterpiece, an American classic, written with such skill and depth that you cannot skim, cannot rush; it has to be savored, thought about, explored. The main character, a young man only referred to as “the kid,” runs away from home in the south and heads west in the 1800s. He meets many groups and characters, but ultimately joins a scalping posse, intent on capturing as many Indian scalps to sell as possible.  Like many of McCarthy’s stories, the theme is bleak, desperate, dusty and desolate, like the land the kid crosses. The main theme seems to be that evil lurks everywhere: there are no good guys or bad guys in the Wild West: just survival. And every single person, whether Indian, white, male or female, harbors evil deep within in the quest for survival. It’s a somber read, but the writing style alone is like a delicate fabric of words, woven so that you see no seams, only a beautiful, dark, and captivating cloth; worth reading if you want to read something by a master. Five our of five stars.

Risks and Rewards

I love taking risks. Getting that adrenaline going; seeing how far I can push myself. There’s a great quote and I don’t know who said it: We don’t know who we are until we see what we can do. From going to graduate school on my own, to skydiving, to cooking (seriously), I love taking risks.

Today I went bungee jumping for the first time ever, in Queenstown, New Zealand, following the WFH Congress in Australia, because I’ve already done the skydiving thing many times, and then there was that gorilla in Rwanda last month…

So 439 feet over a canyon I leaped into the air, executing a perfect swan dive into nothingness, and enjoyed the air pushing against my face, roaring in my ears, the earth rushing up to greet me… then boing! I am gently pulled back from the earth and tossed upward, the way a seal might toss up a fish to swallow; down again slower, then back up again, hanging upside down. I yank a cord attached to my feet and instantly I am upright, and the guys switch on the wench that will haul me up to the platform.

I loved that first jump so much, I did another one right afterward. The guys on the platform loved that. Everyone else had left. Risk? Some, I guess. Reward? Bragging rights, and a massive, pulsating adrenaline rush that you can’t get too many places on earth.

Well, I’m not the only one in the community who loves risk. Barry Haarde  just finished on Saturday his third coast to coast ride, on a bike, racking up about one hundred miles a day. A day. A day! I did 100+ miles on a bike last September in one day and it just about killed me. Despite having hemophilia, HIV and a knee contracture, Barry is a human machine. I can’t imagine what his physicians must think of him. He must shame them; you can’t get fitter than he is, I suspect.

Barry Haarde: Legend, risk taker, reward giver!

There are lots of risks for Barry on the ride: physical problems like bleeds, injuries, illness. Logistical ones like accidents, bike problems. And psychological: what if he didn’t finish? Oh, the humiliation! But he did finish. He always finishes.

His reward? He goes down in history. He’s a celebrity. He’s a cool, righteous dude. He’s a role model for thousands of young people with hemophilia and a few older ones who have hemophilia and/or joint damage. Heck, he’s my role model. Dreams can come true. You’re never too old. Never quit. Think of all the cliches… they’re true!

And Barry posted on Facebook each day, as on previous rides, photos of those who died from contaminated blood, injected through their clotting factor. Intangible rewards: people who will never be forgotten, thanks to Barry. This included his own brother John.

And… tangible rewards for hundreds who will never know Barry, and never even know what he did. Barry raised over $45,000 for Save One Life (http://www.saveonelife.net), the nonprofit I founded to help kids with hemophilia in developing countries. For these kids, each day is a risk. They may not make it to the next without clotting factor. We’re here to help them get through childhood, because each child matters.

Barry writes on Facebook:

“Wheels for the World III” is now complete and our fundraising goal was met! We wish to thank all those who made our ride a success, who include (but are not limited to) our corporate sponsors, Baxter, Bayer, Alliance and Matrix Pharmacies, King BioMed, Colburn-Keenan, our many grass roots donors, America By Bicycle’s fabulous staff, my managers at HP for arranging the time off to complete the ride, and especially, Ken Baxter, for the countless hours spent on photo/video editing, phoning media outlets, and travelling all the way down to L.A. to document my departure. Thank you all and see you next year!!

Next year? Oh my gosh, that means he’s going to do it again! I also need to find a risky venture. Bungee jumping was a 30 second adventure while Barry’s was one month! Maybe I will ride with Barry. That would be the greatest reward.

Thank you, Barry! From the bottom of my heart, which at one point was deep in a canyon today.

http://www.prweb.com/releases/2014/05/prweb11818820.htm
http://www.wsav.com/story/25539876/physical-challenges-dont-stop-man-from-incredible-bike-trip

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