Wheels for the World

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

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.

 

 

A Giant Falls

I was shaken to my core when I learned yesterday, while in Fiji preparing to do a full day hemophilia workshop, that my dear friend Barry Haarde had passed. It was surreal; how could this giant of a man–in stature, in compassion, in physical prowess, in notoriety, be gone? How?

Barry Haarde and Laurie Kelley in Massachusetts after his first cross-country ride

He was so loved by so many. Hundreds of people around the world looked up to him and were inspired by him. I became a cyclist because of Barry, and rode the last 50 miles with him on his first cross-country tour, to benefit Save One Life. This became the first of his many endurance rides.

My favorite photo of us: being silly as a gangster and saloon girl

Over five years, through his “Wheels for the World” campaign, Barry racked up over 20,000 miles, criss-crossing the US five times, and generating over $250,000 for the charity I founded, Save One Life. Barry sponsored a child himself and was an avid supporter for the poor in developing countries. Barry was an endurance machine, despite having HIV, and a contracted joint.

But life was the hardest endurance ride of all. Despite all he suffered and overcame, he passed all too young, at age 52. He and I shared many ideas, many hours talking about life, family, love, cycling, our community. We biked, hiked, spoke together, toured, attended galas and even skydived together (his first time!) on his 47th birthday. (True to Barry’s persona, it wasn’t just a skydive but had to be the highest tandem one in the world.) He loved lighthouses and jazz. Adored his mother and family. We were great friends and he was my hero, and one to our community. He has left a hole in the world. A giant has fallen. I pray we can carry the memories, the concern, the passion and compassion, the mission forward.
Barry was a very private person, and the essay below, in his own words, reveals his shy side, his sometimes solitary nature, his suffering. His ability then to galvanize our community the way he did was an act of bravery. Rest in peace, my dear friend, our dear Barry. You’ve left behind a very big footprint, a very deep tire tread. No one can ever replace you.
Someone once wisely observed that success and fulfillment in life was principally achieved by just showing up.  Never much of a people-person, I had generally avoided showing up at very much of anything over the course of my life.  Perhaps that was due in some measure to having been born with severe hemophilia A in 1965.  I had grown up in a rural area with no local hemophilia treatment center, no summer camps, and perhaps most notably, no factor concentrates.  Years of repeated knee hemorrhages had often resulted in days spent inside reading or studying music.  Limping my way through childhood often resulted in the inevitable teasing from other kids.  “If I cut you, will you bleed?” was a common refrain.  I learned to avoid situations where I would have to talk about my bleeding disorder and began to prefer my own company or the company of my family.
In 1985, AIDS entered our lives.  I was tested with my brother and brother-in-law as were thousands of other hemophiliacs.  After being advised that the risk of AIDS was “minimal,” we had continued using factor concentrates and each of us tested positive for what was then referred to as HTLV III, later renamed HIV.  Pat, my brother-in law, was gone by 1990.  AIDS was never mentioned at his funeral.  My brother, John, survived a paralyzing stroke in the same year as his HIV diagnosis. When hearing the news from the man in the white lab coat that “you’ll probably die within three years,” what does one do at the age of 19?  At a time when most are planning their careers and looking forward to marriage and a family, I found myself asking some very difficult questions.  What would I do with whatever time I had remaining?  Who would care about someone like me with a dreaded and lethal disease?  Did I even want to live in a world that sometimes treated AIDS victims by terminating them from their jobs, firebombing their homes and denying them medical care in hospitals?
There were many questions and no answers.
Like many others, I simply made the best of things and prayed that a cure would be found.  I pursued a career in music as a trombonist, which eventually led to some national tours with Broadway shows and the Tommy Dorsey Orchestra.  I had the opportunity to perform with Bob Hope, Perry Como, Rosemary Clooney and many others.  I eventually left the music business, as health insurance is a little hard to come by when playing the trombone for a living.
At the age of 30, still surviving HIV and hepatitis C, I decided to settle down and get a day-job. Although society’s attitudes toward AIDS and those living with HIV began to slowly change over the years, I still found it very difficult to confide my medical history to anyone.  In a 25-year period of time I told no more than a dozen people about my HIV status. However, things changed dramatically for me in 2007.  My brother passed away.  He lived a courageous life until liver failure from hepatitis C took him from us in 2007.  Other than a friend in California, my brother was the only other person with hemophilia in my life. During the time that my brother was still in the hospital, I began Interferon treatment for hepatitis C.  I did not respond to my initial treatment attempt and for the second time in my life, doctors told me that without a liver transplant, I would not live much longer.
My experiences in 2007 resulted in many changes in my life.  I began to show up.  I resolved that whatever the outcome, I would not depart this world quietly…
Barry Haarde Haarde, B. (2010). Dedicated to Making a Difference. Matrix Health News5(4), 13-14. Retrieved from http://www.matrixhealthgroup.com/NFall2010.pdf

Call of the Wild!!

With only five days and 250 miles to go, Barry Haarde is entering the final stretch of his Wheels for the World bike tour to raise funds for Save One Life.

Barry, an avid cyclist with hemophilia, is completing the last leg of a 1,000 mile trek on the Alaska Highway. At the 500-mile mark of his original 2,000 mile route, he collided with another cyclist (who ended up going home with a broken pelvis) and Barry has been showing his true grit through bumps, bruises, a very sore back and lots of factor infusions to stay the course. Given his accident, 1,000 miles alone will be a major achievement!

Dubbed “Call of the Wild,” this is Barry’s sixth long-distance bicycle tour. Call of the Wild started in Dawson Creek, British Columbia and is ending in Anchorage, Alaska. His first five tours totaled 19,000 miles and raised over $200,000 for Save One Life!

What’s remarkable about this achievement is that Barry has hemophilia, HIV and a contracted knee joint… health issues that would stop most people from considering this audacious ride. But Barry is not most people…he’s 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 knows firsthand the pain suffered by those in developing countries who often lack access to blood-clotting medicine.

Save One Life is an international nonprofit that provides direct support for families with bleeding disorders in developing countries. Save One Life offers families individual sponsorships, college and vocational school scholarships, and micro-enterprise grants. I founded Save One Life in 2001 to engage families who have access to blood-clotting medicine and great medical care to assist families with bleeding disorders who need our help. Many survive on only $1 a day. Save One Life currently provides sponsorships to 1,323 individuals in 12 countries, through over 450 sponsors. Barry is one of them!

Only $3,000 more is needed to reach Barry’s fundraising goal of $35,000. Donate today at Save One Life. And consider sponsoring a child in need.

 

Thank you, Barry!

Follow Barry’s journey on Facebook here!

Haarde to Ride!

Or not hard to ride… after all, this is Barry’s fourth trip across country on a bicycle! He makes it look so easy. 100 miles a day? Not a problem. I’m lucky if I do that three times in a summer!

If you haven’t gotten involved, now’s the time. Wheels for the World: Barry is performing this astounding feat as a fundraiser for Save One Life. Moved by the plight of children suffering without factor in developing countries, Barry has sacrificed time off from work, and his own comfort (though I think he kind of enjoys this crazy, punishing route) to bring awareness to these children, and to raise funds for our core mission work.
Starting in California, and heading east, Barry is traveling 7 weeks on the road. He road through the Rockies, onto Indiana, where he met up with Ryan White’s mother, Jeanne.
He will reach Portsmouth, New Hampshire on July 21, just nine days from now! A small contingent from New England will be there to greet him. After all, it’s only 20 minutes from my house! Afterwards, we will celebrate with a good ol’ New England Clambake in my backyard. Delish!
Barry hopes you will consider sponsoring a child, just as he sponsors Mukesh. We have 70 children waiting!! To sponsor, click here: Save One Life 
Or make a donation in any amount to help us reach our goal! Save One Life, begun in 2001, has delivered over $1.5 million directly to patients in need in developing countries! No one else can claim this, and no one does what we do. We make a direct and powerful impact in people’s lives who suffer with bleeding disorders in Africa, Asia, Latin America, and Eastern Europe.
Thank you, Barry! For your compassion, fortitude and perseverance!
Thanks to gold sponsor Baxter International Inc., sponsors Biogen, Emergent, George King Bio-Medical, Hemophilia of Indiana, OptumRx, The Alliance Pharmacy and individual donors for making the ride possible and helping us gain on our fundraising goal!

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