Barry Haarde

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.

Preserving Our Past

I recently hauled out about 35 8mm video tapes of my family going back to when my son was born. The early ones are grainy, not great quality–they are after all about 23 years old and technology has surely changed–but at least we have some memories. The more recent ones are bright, exciting, lively, captivating. Maybe it has to do with the tape quality, but maybe it has to do with all the stress we were under from that time, as we spent a lot of time worrying, in the hospital, and under a lot of pressure.

Now I am converting them all to my iMovie, backed up on external hard drives, digitized and immortalized for all time. I can edit them, look at them at my leisure, add titles, special effects, voice overs… even improve their quality. You definitely feel a sense of closure when you have secured your family’s history.

This is also what Barry Haarde is doing–preserving our hemophilia history by creating the “Hemophilia Archive,” collecting in a website everything he can find related to hemophilia. It’s a daunting task, but he is compiling what will be the best and most definitive collection of hemophilia videos, newspaper articles and books.

Barry’s work was just profiled in my newsletter PEN, and he starts our article by asking who is Ryan White? Excellent question. We have a new generation, raised on excellent products, prophylaxis and tons of educational materials and social support, that hopefully will never endure what our children endured (extreme ignorance? Remember there wasn’t internet, Google or even a book on hemophilia in 1987!) or what the previous generation endured: HIV, hepatitis C, the deaths of thousands of fine young men.

Barry is a man on a mission. I urge everyone to sign up to receive his installments of the hemophilia archives, and to contribute something. Recently, I sent him the first two copies of PEN, started in 1991. Very amusing; a total circulation of 50 and Xeroxed. I also sent him the cover to the People magazine produced the week my son with hemophilia was born. Right on the cover is breaking news about the Ray brothers (do you remember them?) who were fire-bombed out of their trailer home in Florida, because the three boys had hemophilia and HIV.

Barry and his older brother John were born with hemophilia and each contracted HIV. John died, as did Barry’s brother in law. Barry is creating the Hemophilia Archive to preserve the memories of our past. Our past, the mass contamination of thousands, is truly unique in the annals of medical history. Each life deserves to be remembered.

Coincidentally, I am going this week to see the Boston premiere of “Bad Blood,” the new documentary about the HIV contamination of the 1980s. I’ve seen it already, have reviewed it in this issue of PEN, and on Wednesday night will take my family to see it. I urge you all to see it as well, and to help Barry build his archives.

Take a break from your own home movie archives, as I will, or from recording the present–Thanksgiving, hockey games, school plays– to help our community preserve its precious past. And thanks to people like Barry and Bad Blood director Marilyn Ness for helping to preserve our past. (Archived photo of Laurie and Brian Craft, our hemophilia comedian, another fallen hero)

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