Barry Haarde

Wheels for the World 2020: A Win-Win

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!

Saturday’s riders: social distancing!

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!

The Antonio Boys!

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?

Laurie with brother Jim

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.

Barry’s Spirit

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!

Barry Haarde

What an Action-Packed Year!

I’m sitting at my desk, waiting for a snow storm to roll in, and thinking about how we are ending this amazing year. There was the usual travel to attend NHF’s and HFA’s annual meeting, and I also attended the Bombardier Blood movie showings in California (at FFF Enterprises and Genentech), Michigan, North Carolina and Utah!

My work was honored at a spectacularly beautiful gala hosted by Hope for Hemophilia in New Orleans, where I received a beautiful award and watched a video about my work–that was amazing and surreal! Save One Life, the international nonprofit I founded, received an award at NHF’s gala in September.

Laurie Kelley with NHF CWO Val Bias and Save One Life
executive director Chris Bombardier

I cycled in Massachusetts to raise money for Save One Life while honoring the memory of Barry Haarde, climbed Kilimanjaro in Tanzania to raise money for it as well, and rode a bike for three days with the likes of Kim Philo and Michael DeGrandpre, through three states to raise money for HFA–Gears for Good.

Hiking Kilimanjaro

I visited Haiti, Tanzania, Kenya and the island of Zanzibar. Haiti was a less than 24-hour visit due to the violence, but something good came of it, as we established enough of a toehold to start the first ever hemophilia program in Haiti! If nothing else happened this year but this, I would be completely happy and call it a successful year!

Team Philo!

I visited many old friends and colleagues throughout the country, and also hosted visitors from India, the Philippines and Kenya in my home. I endured a torn meniscus, back spasm, altitude sickness or something like it, flipped over my handlebars in Maryland in a tunnel, and was hit by a car while on my bike in Massachusetts. But I’m still standing!

For fun I saw Metallica, the Rolling Stones, the Who and many other bands, visited the Museum of Natural History in NYC, Buddy Holley’s hometown of Lubbock, Texas and the crash site in Clear Lake, Iowa, and hiked up Mt. Washington in New Hampshire and all through Zion in Utah.

James Hetfield of Metallica… because
Nothing Else Matters!

Save One Life was restructured and welcomed a new executive director, Chris Bombardier!

It’s been quite a year. And so we are finishing our 29th year of existence at LA Kelley Communications! Next year is our 30th anniversary…. 30 years of bringing original and ground-breaking publications, all free. We thank our sponsors for supporting our work here in the US, which supports indirectly our work in developing countries. And we thank you for reading our publications, allowing us to help bring news and insight about bleeding disorders to you, and for all your support for Save One Life!

Here’s to a new year! May yours rock!

Thank you, Barry!

On Friday I went for a 32-mile bike ride, on my usual route that winds through back roads of the north shore of Massachusetts, out to Plum Island to the ocean. It’s a ride I did with Barry Haarde twice, and I thought of how he pushed me into cycling longer than my usual 12 miles, and faster than my usual 13 mph. I actually clocked myself at 15.7 mph. Not bad for age 60.

Last Sunday, August 12, we gathered on a different beach, Odiorne Point in New Hampshire, to remember Barry and his amazing contributions to our community and in particular to the nonprofit I founded, Save One Life. About 50 people from all over the country: California, Connecticut, Denver, Texas, Washington DC and Barry’s family from Florida, trooped in with bicycles to recreate the last 10 miles of his first cross-country journey.

Martha Hopewell, executive director of Save One Life, gave a deeply stirring speech that highlighted Barry’s achievements and impact:

“It was just seven years ago, on this very same day, we celebrated Barry’s first ride across the US at Laurie’s house. We toasted his 3,667 miles and had no clue, at that time, that he would ride 16,728 more or, for that matter, raise over $250,000 for Save One Life!

“Barry’s accomplishment comes after much physical hardship. Barry contracted HIV in the 1980s from contaminated blood products used to treat his severe hemophilia. He also contracted hepatitis C, which required four years of grueling interferon treatments, during which he almost lost his life.” Barry didn’t publicly reveal his HIV status until 2008. “Once Barry made that courageous choice, however, he has been an increasingly vocal advocate for the hemophilia and HIV communities ever since.”

Martha Hopewell, Director of Save One Life

“When Barry undertook his first tour in 2012, he rode for 50 days through ten states and Canada. In addition to raising funds to help needy children, you all know that each day he rode in memory of family and friends lost to AIDS. When Barry finally dipped his wheel in the Atlantic after his first comment was, “Let’s do it again next year!” “And so he did, with the team at Save One Life, his employers at Hewlett Packard and many supporters encouraging him as he overcame physical and psychological barriers to make history. Barry’s goal was to ride through every state. He didn’t quite make it, but his Wheels for the World rides got him to 37 of them…not bad at all!” “We celebrate Barry today. We will forever cherish his enthusiasm for riding and his passion for his blood brothers and sisters around the world. He is here with us at this very special memorial. God bless Barry, and all those in whose hearts you will always live.”

We lost Barry in February. Not everyone knows this, but he took his own life. Despite his beloved status in our community, his fame, with years still ahead of him, he could not outride the darkness that dogged him. Teddy Roosevelt, one of our most accomplished of presidents, and an athlete in his own right, suffered from depression, and wrote, “Black care rarely sits behind a rider whose pace is fast enough.” Barry once told me, “Endurance athletes like me aren’t always heading towards a goal; we’re often running away from something.”

As I rode back from Plum Island on Friday, I could vividly see in my mind Barry ahead of me, his lanky figure balanced on his carbon-framed steed, his left hand shooting our and pointing downward each time we neared a pothole or a crack in the asphalt. His way of warning me of danger ahead. I thought, maybe his legacy is not so much how much money he raised, but of the need to be aware of our community’s potholes and cracks—the mental health issues, particularly depression, that lurk insidiously in our community. I hope addressing these becomes Barry’s true legacy.

Read the press release about the even August 12. Link here https://www.prweb.com/releases/cyclist_barry_haarde_honored_for_his_legacy/prweb15699984.htm

Thanks to our co-host, New England Hemophilia Association, to board members Ujjwal Bhattarai and family, Myrish Antonio and husband Jojo, Chris Bombardier and wife Jessica for attending, to our staff at Save One Life (Martha, Jodi Kristy), to all of Barry’s dear friends who attended, and to Shire and Aptevo Therapeutics, The Alliance Pharmacy and George King Bio-Medical for making this event possible. 

Martha also added thanks to the corporations that sponsored Barry’s rides over the years. The biggest sponsor was Baxter/Baxalta, which contributed almost 40% of Barry’s total with $100,000.  The Alliance Pharmacy distinguished itself as being the only company to support all six of Barry’s rides for a total of $30k.  Biogen/Bioverativ, Bayer Healthcare, George King Bio-Medical, Amerisource Bergen, Matrix Health Group, Aptevo Therapeutics, American Homecare Federation, Emergent Biosolutions and Optum Rx also contributed to this success.

 

Wheels for the World was championed by the Lone Star Chapter of Barry’s home state of Texas, Hemophilia of Indiana, NEHA and Sangre de Oro. The Colburn Keenan Foundation also gave in 2014.

 Most special to Barry were the nearly 250 individuals who gave to his effort. Priscilla Oren was the first donor of every ride! She is joined by Kevin Anderson and Lisa Schober who devotedly donated to all six rides.

 

 

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