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!
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!
“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
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.
Barry the Biker is at it again…. riding clear across America to raise money for and public awareness of hemophilia!
Barry Haarde is a 47-year-old with the stamina and ambition of a 20-year-old athlete and the soul of an ancient sage. He also has hemophilia and HIV, and lost a brother with hemophilia to AIDS. He conceived the idea to ride across America two years ago, and completed one trans-American trip last summer, covering over 3,600 miles in 7 weeks. You can read about that exciting journey in a previous blog.
Last year, Barry became the first person with hemophilia/HIV to complete a trans-American bike trip.
This year, he does it again, but in only 30 days! Starting from Costa Mesa, California, Barry will ride an average of 110 miles a day, through the southwest and plains, to arrive after 3,456 miles in Amesbury, Massachusetts on May 23. This is also the day of our annual Spring Gala for Save One Life, the beneficiary of Barry’s fundraising. Barry plans to attend, as soon as he hops off his carbon-framed steed.
Each day of his trip, as he did last year, Barry devotes to someone with hemophilia who died of HIV. He posts daily on Facebook. If you are friends with Barry on Facebook, you will be reminded of each beautiful man who died. What a tribute! Does anyone anymore put this kind of thoughtfulness into action?
Last year Barry raised about $50,000 for Save One Life, the child sponsorship program for children with hemophilia in developing countries that I founded. This year he hopes to raise $35,000. Please consider sponsoring Barry in any amount. Thanks to Baxter Healthcare, our Gold sponsor!
Great Book I Just Read
Freddie Mercury: The Definitive Biography by Lesley-Ann Jones
I’m on a Queen kick since I witnesses the amazing performance of Gary Mullen and the Works as the Queen tribute band a few weeks ago. I always liked Queen but now love them and appreciate them even more. This is an in-depth look at one of Rock’s most intriguing and talented front men, Freddie Mercury, who is often cited as the greatest vocalist in Rock history. Certainly no one could match his range. This book is a great first look into his life, from a childhood on Zanzibar (I actually saw the house there he grew up in) to his life at boarding school, the roots of his neediness for praise and adoration, the strange duality of his nature–and not just his bisexuality. He was complex, talented and self-destructive. And a showman all the way. His personal charisma, charm and intelligence are clear. This is also about Queen, probably one of the most educated of all Rock bands. Life on the road, Freddie’s affect on the band, how they grew in influence and hit the heights. Those of you who watched Live Aid will recall how Queen stole the show. Their live music far surpasses their recorded. Freddie adored opera and even produced “Barcelona,” an album with his favorite opera diva. You’ll learn about the history of the band, and Freddie’s sad demise to AIDS in 1991. Great read. Four/five stars (but then I am biased)
At some point during our 50 mile ride last Monday, which would
complete Barry Haarde’s epic ride across America, I had to confess to him that
while I was pleased that I was keeping up with him, a world class athlete, at
his pace, I had only learned how to clip in my bike shoes two days prior.
I would not have done this ride at all if it were not for Barry’s insistence
that 1) I could do it, and 2) I had to do it as president of Save One Life, the
nonprofit I founded and the cause for which he just spent 49 days in a hard
saddle, cycling from the Pacific Ocean in Oregon to the Atlantic Ocean by noon
on August 6, raising about $35,000. Barry’s ride truly was epic: no one with
hemophilia, much less hemophilia/HIV, had even attempted this. Barry attempted
and was victorious. And I was so privileged to ride alongside him for the last
Privileged but not worthy. I am such a cycling novice. Somehow,
Barry seemed to think that because I had summited Mt. Kilimanjaro last August
(if you read my blog from a year ago you know that I was pretty much dragged unwillingly
up that summit in the final 7 hours; the rest of the hike I did just fine), I was naturally going to be good at cycling. But my bike, an Orbea Diva, a very
expensive 50th birthday present to myself four years ago, scared me.
Yes, my bike scared me.
Its ultra light carbon frame, clip pedals and wacky gear shifting made it a totally different ride from the heavy, clunky but sturdy hybrid I had
been riding for years. When I first took the Orbea out for its maiden voyage, I turned to look behind me at traffic, in order to execute a quick U turn. I
promptly fell in the middle of Route 1 northbound in Rowley, Massachusetts—not a good place to be! I was mortified. I couldn’t get my darn feet out of the clips (you know something is bad when I say the word “darn”). I couldn’t get the feel of the bike; like a highly sensitive horse, the bike responded immediately to any slight shift in my body weight.
I couldn’t get the hang of the gearshift: what did the instruction manual mean by two clicks? I shifted gears like crazy, not knowing whether I was in
high or low or what. I rode the bike only twice that year, not enjoying either ride. I didn’t ride it at all the second year. My beauty hung on the garage
wall, ignored, like a forlorn trophy gathering dust. Last year I took it out a few times, scared, unsure and still not able to shift any gears. I marveled at the cyclists I saw, how they had mastered their steeds. I had little time to crawl back humbly to the bike shop and ask how to shift the gears. Soon, I told myself, soon.
Then came Barry Haarde, with a wonderful idea to raise money for Save One Life. Barry was so taken with our cause, that he proposed something no one had ever done. Save One Life would raise the money with him, and support his trip. He joined America by Bicycle and 49 other cyclists, and embarked on a well defined route that would lead him to my backdoor, practically: Portsmouth, New Hampshire, just 20 minutes up 95 north from my house.
And he wanted me to join him that final day, to cycle 50 miles to dip our wheels in the Atlantic Ocean in victory.
But I was not worthy to wipe his clip-in bicycle shoes!
So I started rehearsing, mounting that feather light frame,
wobbling on razor thin tires, jamming my feet helter-skelter into the foot contraptions,
eventually snagging the pedals, and off I went. The most I ever cycled at one
time was 12 miles. My first venture of the day left me saddle-sore, bow-legged
and bruised badly. This is fun?
Undaunted, on Sunday, August 5, I waited for the cyclists to roll in, in Portsmouth, New Hampshire. And in they came: most of them were in their 50s and 60s, silver haired speed demons on a gorgeous
collection of elite machinery: hip clothes, excellent physiques, and not the least bit tired looking, despite having cycled 76 miles that day. Gulp.
Finally Barry coasted up to the Comfort Inn, where we waited with hugs for his achievement thus far. He had a wonderful, fantastical faith in my ability
to do the 50 miles the next day. Should I tell him now about the clip in shoe confession? Maybe I should tell him that I still couldn’t shift the front gears
at all. That might have an impact on my ability to climb hills. Nope. There were other things to do. Barry’s family had secretly flown all the way up from Orlando to welcome him and surprise him and we were keeping this a state secret. They had all checked in about 30 minutes before.
While Barry was upstairs getting settled in for the evening, his mom Emily, age 84, snuck down stairs and waited in the lobby armchair, just as cool as a cucumber, but giggling with anticipation. When Barry reappeared, he walked right by her, sat in an adjacent armchair and began speaking to me about the day’s road trip. The surprise was getting anticlimactic when the son didn’t recognize his own mother (who in all fairness was turned away from him watching the Olympics on TV). I eventually had to suggest that the nice lady in front of him might come to dinner… and then, what a sweet reunion! Barry had hoped his family would join him and so they did: brother, sister, nieces and cousins.
Dinner that night was a celebration and ceremony of the achievements of a diverse group. Barry was riding not only to highlight the plight of the
poor with hemophilia in developing countries and to raise funds, but also had been devoting each day in memory of someone who had died of hemophilia/HIV. This included his own brother and brother-in-law, whose photos he would wear on his back the next day, the final day. I would spent a lot of time on Monday staring at that back, staring at those wonderful men who passed away so young.
As we left the dining room, Emily, bringing up the rear, leaning on her cane for
support, joked, “I’m the cow’s tail,” which made me turn and smile at her—this was a phrase I had not heard since my grandmother passed away in 1996. It was one of her favorite phrases. That phrase would dog me the next day.
Adrenaline was surging Monday morning! I hopped out of bed at 6 am, donned the very stylish cycling clothes. By 6:30 am we had gulped down many carbs at breakfast (oh my, could these guys eat) and straddled our bikes, ready to go. “Barry,” I timidly said, first confession about to seep out. “Could you check the air in my tires? The Orbea hasn’t been in the bike shop in… about four years.”
Oh yeah. It was at 20 pounds of pressure when it should have been 120 pounds.
Off we went! The day was cool, with thunderstorms predicted but which never emerged, thankfully. I was thrilled when we zipped away, over a
bridge, down the road. This was pretty easy.
Twenty minutes into the ride and I noticed I was really losing ground as Barry pulled away from me. Try as I might, I couldn’t recover. Wait—my bike was making an odd, rhythmic sound. Barry slowed down and I asked him about the sound. The front gear? I reached behind and squeezed my tire,
which was completely flat. A flat tire. Me. The interloper. Barry remarked he hadn’t had a flat tire in oh-about 2,000 miles, not since Wyoming. Me, 20
minutes into an historic ride.
We called the support van, which showed up immediately and changed the tire. This put us about 15 minutes behind everyone. What a difference when we began riding again! We zoomed along. Despite not being able to shift the front gear, it was permanently stuck in low gear, so I couldn’t manage any hills well.
By about 9 am we had our first pit stop (SAG, as they call them). Everyone gathered together, chowed down granola bars, peanuts, chips, fig newtons, oranges, replenished water bottles and joked about. Jeff and Al decided to switch bikes, not something recommended but after 3,600 miles, they must know what they are doing.
Off we went again; the miles passed easily and Barry and I enjoyed coasting by picturesque New England towns and back roads. Old Congregational
churches sporting white steeples, horses grazing in the fields, men fishing off bridges, rolling green hills and rich green trees. Barry couldn’t stop remarking about the lushness of New England compared to Texas, where he now lives. New Hampshire is a pretty state and typically New Englandish; it’s a state I turn to for adventure and fun. It’s here I go rock climbing and skydiving—and now cycling.
I confessed to him when I was feeling more cocky about my ability to master the clip in shoes just on Friday. Barry diplomatically didn’t comment.
The next pit stop seemed to come up quick: a bakery in downtown Exeter. Again? Really, guys? Bagels, donuts, coffee… I could have kept going
but it seems the team was eating its way across New Hampshire! Off we went again and this time no more stops…. So we thought.
The ride was going unbelievably well. Barry, having a rear view mirror attached to his helmet, knew the best times to pull alongside me and chat. Cycling is so much better when someone is along to chat with or pace you. I learned more about this remarkable man, the brother he lost, how he got
involved only since 2009 in the hemophilia community, how it took his brother’s death to push him to become a participant, then activist, and now, first person ever with hemophilia to cross the US by bicycle. With over 1,400 friends on Facebook, almost all related to hemophilia, Barry has become an icon in our community.
Barry announced my milestones: “Twenty-four miles, twice as long as your longest ride!” “Thirty-five miles…” and then “Just two miles to the
high school…” where we could congregate, do a group photo and then be escorted by New Hampshire’s Finest to the Atlantic Ocean at Wallis-Sands Beach for the wheel dipping ceremony.
And then disaster struck: Barry’s bike made a terrible noise and he pulled over to the shoulder, on a residential street with magnificent homes.
Only two miles from the “finish.” His chain had snapped. With characteristic Zen calm, he said, “That’s it. I’m done.” And then added ruefully, even smiling, “Figures. I’m always the underdog.”
I happen to like rooting for underdogs. He called the support vehicle, but wasn’t sure just where on the route we were. I thought it was North Street; Barry thought it was West street. The driver got the wrong street number and waited for us down the road somewhere. Precious minutes were ticking
by. At 11:45 am, with or without Barry, the team would cycle to the beach and dip their wheels. Barry just had to be there!
“Take my bike,” I begged. “It’s important that you finish!” But Barry patiently explained 1) it’s a girl’s bike (but it’s only 2 miles!) 2) the seat is too low (well, bend your knees!) 3) I can’t bend my knees due to arthritis (Oh. I felt stupid; all this time I never noticed that Barry couldn’t bend his right knee beyond 45 degrees. And he did this all across America on that knee?) 4) The seat is too low. (But…but….)
The support vehicle finally showed, and Mike, the driver, was none too pleased. Tension was mounting. He thought they couldn’t fix the chain in
time. Take my bike, please. Mike then took my bike, muttering “Where’s your personal support vehicle?” and jacked up the seat, as high as it would go, “without it snapping in two,” he warned. Barry sat on it; his feet couldn’t even clip in to the pedals. But off he went. It was amazing how fast he zipped off; before we even got into the van—with Mike frowning at an unregistered rider in the support van (me)—Barry was
We drove in to the high school, begged everyone to stop the photo shoot to wait for Barry and what seemed like agonizing minutes was really only
about 5. Barry wheeled in, looking like a teenager riding a little kids’ bike. He got cheers and whoops from his own teammates, and a few jokes. Amazing victory; seriously, the Olympics held no greater charm for me than this sweet moment.
After the shoot, the police positioned their cars and everyone slowly cycled to the beach, an armada of wheels, helmets and great big smiles.
Al, the joker (every team has one) kept declaring, “I want to be last!”
But Al, someone shouted, Laurie is! “Aw, she doesn’t count!” he quipped. And I agreed; me, the cow’s tail, didn’t count. I only did 50 miles,
and these cyclists did over 3,677! 50 days to my one day!
A huge crowd was waiting at the beach, as they knew to expect the riders. People of all ages, applauding at their achievement! Present too were
Save One Life staff and Janie Davis of Baxter Healthcare (Baxter sponsored the ride) and even a few local families who so kindly came to give their support.
We dipped our wheels in the chilly Atlantic, amazed at how this day turned out. It seemed no obstacle, no matter how close to the finish, could
stop the incredible Barry Haarde. His mom, standing by his side in the brilliant sunshine, beamed. So proud of her son, as she should be. So was I; so were we all.
Congratulations to Barry Haarde and to all the cyclists that day; I do believe you don’t know who you are until you know what you can do, and
pushing yourself to near-extremes is one way that adrenaline junkies like Barry and me find out. I didn’t know I could do 50 miles on a bike I was afraid of. Barry didn’t know he could do over 3,677 having hemophilia, HIV, a half-useful knee. I think when you attempt feats with a purpose, a cause greater than yourself, a cause that helps others less fortunate, you find strength within, and resources within, you never knew could be possible.
And just to prove it, Barry pushed me some more. You’d think he’d want to rest after traversing the US? No way: 12 more miles the next day in Massachusetts; up to 6 am Wednesday to drive to Maine and do another 12 miles all along the gorgeous coast of York. I couldn’t think of a better way to share his victory. And I can’t wait to do the next ride with him.
Special thanks to Baxter Healthcare for sponsoring Barry’s ride! Thanks to all who donated!
Book I Just Read
The Road Less Traveled: A New Psychology of Love, Traditional
Values and Spiritual Growth by M. Scott Peck
An appropriate title to read after this road trip, but not nearly
as exciting. Written in 1978, the book explores the meaning of love through the
eyes of a psychoanalyst. Love, as he defines it, is a journey that helps
another grow spiritually. Peck delves into meanings of love and discipline,
expressions of love, and shares vignettes of how people overcame emotional
difficulties. He describes the difference between love and being “in love”—which
was well written. I read this in the 1980s and thought it was brilliant; rereading
it again, I now see it as dated, fairly academic and dry, and limited. Who can
really say what love is, when there are so many types of love? The first half of
the book is more about love and mental health and taking personal responsibility for navigating life—good stuff; the second part gets into spirituality, God,
science and Christian values. Some of his take on religion vs. science is a bit
head-scratching. I found the first half of the book more readable and useful
than the second half, which was muddled and lost focus. Two out of five stars.