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 BombardierUsha 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.
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.
A year ago I was a contented jogger and sometimes mountain climber. Not often, but enough to say I can do it. I also cycled about once a week using an old hybrid bike, which means that it’s not as slick as a touring bike (those skinny bikes with skinny people riding them who have Lance-Armstrong-like ripped muscles and wear cool shirts) but not as bulky as a mountain bike (which have really thick tires and usually young, crazy males riding them through forests). I wasn’t too competitive.
Then Barry just had to go and cycle across America in 2012 (3,700 something miles) to raise money for the nonprofit I founded, Save One Life. And when he hit New York, he emailed me that I was going to ride
the last 50 miles with him to dip our wheels in the Atlantic Ocean, at Rye beach, in New Hampshire, not too far from where I live.
Oh really? I couldn’t refuse; he shamed me into it.
So I did have a top-notch Spanish touring bike, an Orbea Diva, though dusty and stiff, hidden in a closet. It was in storage for the past four years, after I bought it as a consolation prize when I turned 50, fell in the middle of the street on its maiden voyage, and put it away, too scared to ride it. Well, that’s all chronicled here. https://www.blog.kelleycom.com/2012_08_01_archive.html
Today, I continued what has become an addiction. (Barry, you knew this was going to happen.) I hopped on my baby (the Diva, which used to give me nightmares as it sat eerily waiting for me in my cellar closet, like some haunted, phantom thing from a Guillermo de Toro movie) at 9:30 am and headed out for Route 1A, and cycled along the Atlantic sea coast for over four hours, covering 64 miles, the most I’ve ever done. Yes, it hurt after a while, but you just can’t stop it. Whatever it takes.
Last week, if you are friends with me on Facebook (you are friends with me, right?), you might know I spent four days solo in Sedona, Arizona, where I indulged my new addiction. I checked in last Sunday into my hotel in Sedona, a mere two hours after the Arizona Hemophilia Association meeting, and almost immediately went for my first mountain bike trip. Why? I
was surrounded by majestic Boynton Canyon, with the desert and all its twisting, red-dusty paths calling to me. Something different and new. And kinda scary. Mountain biking is very different than touring biking. It’s like the difference between riding a Mustang with an attitude using a Western-saddle, and sitting all pretty and proper on a fast thoroughbred (well, not that fast when I am on it) on an English saddle.
The day was hotter than I thought, and it would be easy to dehydrate.
I slipped on a new backpack, very small, with a built in “Camelback”
water pouch. This has a tube connected to the “bladder” (I know, sounds gross) from which you can easily drink water.
I set out on the bike, hit “Deadman’s Trail” alone, and pounded my way through red dust, over lots of stones and sand. Sedona sits at 4,500 feet, and my heart was soon thumping in my chest. To my left, the massive sandstone wall of Boynton Canyon, with towering red rocks. Cacti and scrub bushes fringed the trail. After 30 minutes, I felt I was in the middle of nowhere, alone… the path was steep. I stopped, chickened-out (it is DEADman’s Trail, after all), and decided to turnaround the way I came: downhill, rocky, exciting!
My heart was pounding furiously, meaning that I
was overheating. It was trying desperately to circulate overheated blood from
my midsection, where it was “cooking” my internal organs, to the extremities. (I recall all this from my Outside magazines, when I used to enjoy reading about other people doing stupid things outside) This is about the only cooking I am ever successful at. Rest in the shade and water would take care of that. I took off my helmet, and my backpack, to allow my sweat to do its job and cool me.
The next day, after four hours of hiking Bear Mountain and Devil’s Trail in the 96-degree heat, in which I drank perhaps more water than in my whole life combined, I actually went for another mountain bike ride, on Cockscomb Trail. Who would be crazy enough to do this after such long and superheated hikes? People with bicycle addictions.
George, the Native American guide from the bike rental shop, gave me excellent tips on biking the trail. It was much better than Deadman’s Trail; more trail than steep rock steps, exciting. I found the trail head off the highway, entered, and was frustrated to stop a few times as I
didn’t have my rhythm down yet. Don’t power up the hills, George had said. That’s what you
“touring” people do. Just sit back, go in your easiest gear, and pretend you are walking “up” the hill. The hill with lots of rocks, you mean?
Yes. When I got through the rocky part, the trail smoothed out and became like the Run Away Train ride at Disneyworld. I marked the trail as I went with the contents of my stomach. I guess I pushed myself too hard and was so spent. But it was fun!
Boynton Canyon
On Wednesday I wasn’t sure at first how to start my last day. Swim in the pool? Attend the yoga classes? Leisurely breakfast? Nope. Up at 6:30 am, made some tea, ate a banana and some berries, checked email, wrote to my daughters to tell them to come and find me if I disappear, threw on my riding gear and headed to the Activities Shop. By 8 am, with some cloud cover thankfully, I pumped down the road, to the Fay’s Canyon trail head, and dove into the
outback again to Cockscomb. I was going to nail it this time, and make George proud of me. No more walking my mountain bike. I did so much better; only had to stop twice as opposed to three or four times on Sunday. At times I felt like I was on a runaway horse, recalcitrant and skittish, as I bounced over the rocks, fishtailed in the red, fine dust, and then rolled up
and down the roller coaster trails. It was challenging, exhilarating, dusty, dirty, sweaty. And did I mention addictive?
After that, I came back out to the road, and then pedaled back towards the hotel, first taking a side tour to Deadman’s Trail again, determined to see it through the end. It was so much harder than Cockscomb, but I did much better this time. I actually pumped up the first very hard incline,
with many rocks, doing just what George had suggested. And in 20 minutes got to the tricky part where I gave up on Sunday. It was better after that, but still challenging. It suddenly got scorching hot as the sun rose, and I was sweating and drinking tons of water. I felt like I had leaks in my skin. Water in, water out. I had to stop now and then, and rest or walk the bike. At one point, the bike seat (which had a loose part to it that stuck out) caught on my shorts, tore a small hole in them and wouldn’t
allow me to hop off when I needed to, so down I went in the dirt, the bike landing on top. The handlebar jammed into my thigh, causing instantly a raised hematoma. Ouch. At that very second a runner swept passed me (out in the canyon?), a Matthew McConaughey
lookalike, tanned, trim, ridiculously handsome and fit, and half naked. We said
hello… instant painkiller. Back on my bike, finally reaching the road, and aimed for the turnoff for my hotel.
Wipe out!
But I didn’t want to go back, as it meant I had to leave tomorrow for Boston! I still had half an
hour so I swung the bike around, pedaled back to Cockscomb Trail and did it again, and this time only stopped once! It was such a great feeling. I was so incredibly hot, my heart was pounding, sweat
pouring out of me, my legs all banged up and bruised, and I never felt better in my life. (Well, maybe if I saw Matthew McConaughey’s look-alike again)
After the 64-mile ride today, I came back, lay on my bed still in full biking gear, and passed out for an hour. How will I make it to 100? Because I have to do 100. What good is an addiction if it doesn’t keep pulling you to push the envelope?
So here it is: On September 21, I will ride 100 miles to raise money for the Springfield Police Department, in honor of Officer Kevin Ambrose, who was killed in June 2012 in the line of duty, the first officer in that city in 25 years to die in action. My brother Tim, also an officer, was a good friend of his. So he and I will ride together, along with 200 other officers, with a full State Police escort. I might need it.
And, Barry, who got me into this mess to begin with, is going to ride with me, Kimberly
Haugstaud (executive director of Hemophilia Federation of America), Vaughn Ripley, and Allie Boutin of HFA (and a neighbor of mine!) and more, to raise funds for HFA on September 27. “Gears for Good.” Want to sponsor me? Take pity on me and my addiction, and think of a pledge. It’s all for a good cause—for HFA. And it’s only a few days after my 100-miler (my “Century”)—so I will be primed and ready! Or totally passed out somewhere in my gear. What I fear most is not the these two rides, but Barry whispering how I should do the cross-country ride with him in 2014… Barry, it’s not nice to take advantage of someone with an addiction!
This book was a best seller, and recommended by my favorite magazine, Outside. In 2002, Rory, a
free-lance writer, decides to walk across Afghanistan just months after the Taliban were deposed, retracing the path of a former and ancient ruler, Babur. He claims to be researching a book about Afghan history and Babur, but this book is mostly about the people he encounters and the extreme physical hardships he endures. The problem is his writing is mercilessly dry, without emotion or sentiment, and seemingly for no purpose. Why does he undertake this trek? Just to see if it can be done. There is no setting up of girls’ schools, as in Three Cups of Tea; there is no bonding of humans who endure outside exposure and
survival. There is barely even a bonding with the faithful and suffering dog he adopts and who accompanies him. While he does have potentially an interesting story, it is told in such a way as to make the reader wonder why he or she is reading it. To what point? There seems to be none. And there is no excuse for mediocre writing; Rory had plenty of time alone to conjure up literary references, flowing of words, rhythm. It’s flat, uninspiring writing. I learned a bit about Afghanistan but didn’t enjoy the trip much. Two/five stars.
Save One Life celebrated its third annual spring Gala at an elegant, waterfront venue, The Exchange, located at Boston’s historic Fish Pier. Enjoying the balcony overlooking the ocean, or the expansive interior, about 120 guests from across the country dined on hors d’oeuvres and mingled. Guests represented the hemophilia community in full range, from pharmaceutical companies, to specialty pharmacies, from patients to families.
Neil Herson receives recognition from Martha Hopewell
I opened the evening at 7 pm welcoming our guests. I like to use very current events to weave into my talks, and found a metaphor to use in my opening: while getting ready for the gala, I dropped something on the floor. When I bent down, I happened to look under my bedroom bureau and amidst the dust bunnies, I found a shoe that had been missing for some time. It made me think that sometimes we have to go into the dark places, the not-so-glamorous places, even the dirty places where we’d rather not go to find the things we are missing or have lost. In our affluent society (and most of us are affluent compared to those we serve), we slowly and subtly can lose our compassion, tolerance, mission, and unconditional giving.
A slide show of the many faces of children and young adults from developing countries helped by Save One Life played in the background during the three hour gala, showing some of those unglamorous places–megaslums, rural villages, hamlets, townships. It also showed the faces of suffering.
Usha accepts award
We thanked our sponsors of the event, donors, and presented Donor of the Year award to Rich Gaton and his company, BDI Pharma, who sponsor 17 children. Special recognition was given to Patrick Schmidt, CEO of FFF Enterprises (88 children), Wolfgang Marguerre, chairman of Octapharma (70 children), and Neil Herson, president of ASD Healthcare (50 children). Only Neil was present from Texas that night.
We had special guests present: Usha Parthasarathy and her husband from India. Usha is our volunteer liaison, and we simply would not have an Indian program without her. We have over 500 beneficiaries just in India and Usha maintains updates on them all! She received a surprise award for her dedication. And she accepted Program Partner of the Year award on behalf of the Kunnamkulam Chapter in India.
A special award was also given to Barry Haarde, a 47-year-old Texan with hemophilia and HIV who had just concluded his second Ride Across America that afternoon, at 3 pm in Salisbury, Massachusetts! Such dedication! Barry averaged over 100 miles a day to raise $35,000 for Save One Life. Barry also dedicated each day of his ride to someone who passed away from hemophilia and HIV, and posted their photos on Facebook. Remarkable thoughtfulness!
Our Inspiration Award went to board member Chris Bombardier, a 27-year-old who has summit both Kilimanjaro and Aconcagua, highest peaks on their continents, becoming the first American with hemophilia on Kili, and the first person with hemophilia ever to summit Aconcagua. We were blessed to have both men in our midst Thursday night.
Laurie with local patients Justin Levesque and Mark Zatyrka of AHF
Thanks to everyone who attended this wonderful event! We raised money to help support our great team. Without them, we could not operate or progress; with them, we have progressed so far!
We have more children waiting for sponsorship. Please visit www.saveonelife.net to learn more! (More gala pics to come!)
Interesting Book I am Reading All That You Can’t Leave Behind: A Rookie Missionary’s Life in Africa by Ryan Murphy
This might be a good first book for someone contemplating becoming a missionary in Africa. It’s an interesting first look at the culture shock one can experience. It’s also interesting what drove Ryan and his wife and new baby to ell everything they owned, beg for survival funds, and leave to a difficult place to teach the schoolchildren of other missionaries. For the experienced, this book is much too fluffy, superficial and lacking in depth, history. It’s told in a rambling, blog-style or journal-style, which might appeal to the younger generation. Not bad, but not meaty or deep; it’s a quick read, too. Two/five stars.
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)
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Blood Meridian [Kindle]
