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!
After breakfast on Saturday October 4, I went with the “tuk tuk” driver to pick up Sithan. The tuk tuks are autorickshaws—motorcycles with rickshaws attached to them. Sithan is the 33-year-old president of the Cambodian Hemophilia Association (CHA), who has hemophilia. He was to join me today for a tour. When we got to his home, he met us at the gate not looking well. Pale, tired… he was bleeding from a serious dental extraction last week and it was really bothering him. We brought factor for him on this trip, and he had already used several vials, but now
needed rest.
The stupa
So I went alone to the Choeung Ek Memorial, the “Killing Fields,” so dubbed by Dith Pran, theCambodian journalist who was portrayed in the movie The Killing Fields. This would be my second visit to a genocide
site (my first was in Rwanda earlier this year).
The tuk tuk ride was insanely wild, like being on a run away roller coaster. We jostled through
the streets of Phnom Penh, dodging cars, motorbikes and other tuk tuks. The tuk
tuk is open-sided, with a roof. The wind whipped my hair; the air is
gritty with pollution. I can’t help but think I’m in a little cart at a
low-budget Asian Disneyworld, on Mr. Toad’s Wild Ride. Motorbikes, carrying
young ladies with pink helmets, young men with intense looks wearing surgical
masks, even children—some sandwiched between the father driver and mother
passenger, sound asleep—swarm the cars and tuk tuks like ambitious bees.
Contributing to sensory overload are the odors: diesel fuel, thick, acrid
exhaust from vehicles; sudden sour smell of rotting garbage as we cross a bridge;
a surprise charcoal smell laced with delicious scent of roasted beef.
Mass grave of 450
My driver took back roads and alleys, some of which were nothing but huge mud puddles from the
rain. I actually started feeling really queasy and nauseated. I was glad that Sithan stayed home!
We arrived after 40 minutes and the driver sat in the lunch area while I paid the $6 admission
and picked up a headset and started the tour. Overhead was a brilliant blue sky
with a glaring sun basking us in 90° sunshine. Directly in front of me was the
huge stupa, or Buddhist temple. The soothing and paternal voice on the headset said to go there last. The narrator himself survived the vicious Pol Pot regime and felt honored to be able to
narrate what happened. There were many killing fields throughout Cambodia but
this was one of the most famous. There wasn’t much to see; some signs informed
us of what once stood there—the area where trucks would disgorge prisoners
(prisoners! They were men, women and children, average citizens), the place
where prisoners would be registered.
But there were graves of hundreds of victims, vaguely protected by a
small stockade around each mass grave. The first grave contained the remains of
450 victims; a sign told us that each time it rains, more remnants are
unearthed. It is not unusual to find human teeth or small bones still, after
all these decades. Clothing was displayed, and the bones of victims. As I
listened to my headset, a one-legged, dirty man stood by a tree; we were separated
by a wire fence, that’s all. He was begging, begging in his own country. I
handed him a $5 and he asked, “America?” And I nodded and smiled.
The Killing Tree
The Pol Pot regime
and his Khmer Rouge fighters took control of the country from 1975-1979, in the
attempt to create a Communist utopia. Pol Pot believed it was possible for
Cambodia to be self-sufficient, and in the process, dragged his country back to
the Stone Age, where everyone had to work communal farms, with no equipment or
machinery. All foreigners had to leave. Next came the purge of any
intellectuals: doctors, teachers, lawyers. Anyone educated was at risk of being
tortured and killed, and this was done in crude and primitive ways. Eventually
victims were brought to the Killing Fields, where they were murdered. Whole
families were wiped out. These are sites where unspeakable atrocities took
place. I reflected that from 1975-1979, the years I was in college, enjoying
life, going to dances, studying, eating, having fun… an entire generation in
Cambodia was being wiped out. While I slept peacefully in my bed each night, Cambodian
children were starving, dying, mothers and families were being tortured. They
were living in hell, imposed on them by their own rulers.
Stockade fence with prayer ties
I approached one
mournful monument, a tree, where babies were bashed to kill them, then tossed
into an open grave. The tree was decorated with little wrist ties of many
colors (you receive the ties when you make an offering at a Buddhist temple).
They looked like little yarn butterflies fluttering in the wind. The graves were
simple, marked with hand-carved signs. The bones, like those in Rwanda, were
out in the open. Nearby, a huge tree stood, a survivor, a mute witness to the
atrocities from the past. On it the Khmer Rouge rigged up loud speakers, over
which was played constant, loud propaganda from the screeching voices of the uneducated soldiers. The loudspeakers also covered up the screams of victims.
Eventually I came to the stupa. It is steady, solid, soaring… and stacked with skulls. Perched on the corners of each section are stone mythical creatures in Hindu religion: Garuda,
the winged birdman who carries Lord Vishnu. And Naga, a dragon/snake that is Garuda’s enemy. That they appear together here denotes peace. After removing my shoes respectfully, I climbed the marble stairs, which are strangely cool, even in the suffocating heat.
Facing me is a clear, acrylic wall, encasing thousands of skulls, bleached
white, stacked neatly. Each skull has been analyzed and marked with a color dot to denote its sex and how the victim was killed. They were killed in many
different ways but all primitive: cleaning rod was a favorite method. You can
look at eye level into these skulls, which were once peaceful, innocent people,
mothers and fathers, young men and women. You feel like talking to them,
apologizing, wishing they could have a chance at life, a normal life. Buddhists
believe in reincarnation, and looking at the bashed and pierced skulls, you
want to believe this is true for their peace. So few of us ever get to see a human
skull. When you gaze at one, emotions aside, you marvel at its architecture:
the nasal passage ways are intricate and refined, thin sheathes that capture
minute scents; the occipital bones are strong and full of character, creating
almost a surprised look. You’re reminded that each of us has one of these hollow-eyed,
whitened shells within us too, and, Caucasian or Khmer, we all look pretty much
the same once the skin is gone.
It started to downpour as I left, as the heavens opened and “threw down their spears.” (well,
it was stars in the poem) The driver unfolded the tuk tuk’s side canvas to
protect me from the rain, but with him driving, and other motorbikes and tuk
tuks throwing up water and mud, it was pretty messy, and yet refreshing as the
temperature has been a steady and muggy 90°.
Monday October 6, 2014
We’re in Siem Reap today, where the ancient temples of Angkor Wat are, a World Heritage site (though better known in the west for being the location of the filming of “Tomb Raider”). After a great breakfast in the hotel, where they cater to your every need, Martha, Sithan and I headed in a tuk tuk to the Angkor Children’s Hospital nearby. Already 20 children and their
families were waiting for us. Cambodians are a truly beautiful people. I loved seeing the little children’s faces turned up at me, mixing shyness with
curiosity.
Martha gave a presentation about
Save One Life to the audience while Sithan translated. It was a long day in some ways:
sitting in a hot meeting room, tightly surrounded by incredibly impoverished, often illiterate, families whose children have bleeding disorders. We were only going to interview three families, but instead, we decided on the spot to interview them
all! So sitting in chairs that are like elementary school chairs, with a small tabletop attached, we divided up the families. Soreng, the social worker, took
some; Martha and Sithan took some; and the Dr. Sing Heng and I interviewed some. It took about two full hours, maybe more.
I also photographed them all. I handed out the gift bags, which were an
enormous hit—each child received an authentic Beanie Baby and some toiletries
and candy. The kids were adorable and mischievous, giggling and casting glances
at me, some brazenly looking and smiling. We connected with almost all.
As we interviewed, sweat constantly slid down our backs, dripped off our hair, but what an honor to meet so many! The local volunteers here did a great job mobilizing the families. The families were given meals in Styrofoam boxes, for which we paid. The hospital would kindly cover
their transportation costs.
The stories are sad; some heart-breaking. One boy with hemophilia, about 20, has mental issues; his
mother is partially paralyzed. They are very poor and have such hard lives. All these children will be available for sponsorship through Save One Life.
Cambodian Hemophilia Society (in Siem Reap), with Martha and Laurie
It was tender, and heart breaking.
It’s easy to feel overwhelmed, almost defeated when facing the crushing truth
of poverty and hemophilia. Will we ever make a difference? And then, I think, if
we were not here, who would help them? Just $22 a month can truly change their
lives. We’ve seen it happen in other counties, and we are going to see it happen
in Cambodia.
(Do you see a child you want to sponsor? Visit saveonelife.net)
Great Book I Just Read
Survival in the Killing Fields [Kindle]
Haing S. Ngor
Ngor is famous for portraying the journalist Dith Pran, the subject of the 1984 movie The Killing
Fields, which won Best Picture, and earned Ngor, who was not an actor, Best
Supporting Actor. Ngor himself escaped the Killing Fields, but spent four years
working hard labor and starving on a communal farm. He had to hide his
profession as a doctor or he would have been killed. He was tortured several
times, brutally, and endured chronic starvation and deprivation. The story is
an easy read technically, but difficult emotionally. He reveals all that he
experiences from the point of view of the victim; he didn’t understand what was
happening, never heard of Pol Pot, and could only focus on survival. Eventually
he escapes in the last throes of the regime, when the North Vietnamese invaded,
and enters Thailand. He makes his way to the US, a broken man, angry, but still
surviving. Though he became a Hollywood overnight sensation, his life still did not go
easy. This should be required reading for high school students, and any fan of
history and survival. Four/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.
A very special week in Hemophilia Adventure History! On Tuesday, Chris Bombardier, a 27-year-old Colorado man with severe factor IX deficiency, sets out to climb Aconcagua, a 22, 847 foot mountain located in northern Argentina, near the border of Chile. It is the highest mountain in the Americas, and is part of Chris’s unprecedented Seven Summits climb. Unprecedented because no one with hemophilia has bagged all seven summits—the highest mountains on each of seven continents.
Why is Chris doing this? How dangerous is it?
“Obviously I hope to summit,” the Denver native told me in a recent telephone interview. “I also hope to raise greater awareness of hemophilia globally. Most people in the States don’t even know about hemophilia; think about how little is known worldwide. I think having someone with hemophilia pushing the limits is a cool story in itself, but I hope it raises awareness of the discrepancy in treatment.”
Chris knows something about that. He sits on the board of the nonprofit I founded, Save One Life, which is dedicated to assisting individuals in poverty with hemophilia in developing countries. He also has helped establish a blood testing lab in Eldoret, Kenya.
“Physically, I feel good, strong,” says Chris, an avid mountaineer and adventurer. Chris already has knocked off one summit: Kilimanjaro in Tanzania, when he climbed in April 2011, becoming the first American with hemophilia to summit it. He is using a long lasting factor in experimental studies currently, which, he says, is working well. He plans to infuse on the mountain as needed.
Chris will be climbing with two guides and eight other climbers. Chris’s climb is being funded by LA Kelley Communications.
“We start the climb on Tuesday, January 29th with a hopeful summit day around February 7th or 8th, says Chris. “I posted a thorough itinerary of the climb on my new website and blog.” Chris also hopes that he inspires people to donate to Save One Life; while his climbing costs are covered, every penny he raises goes to helping run Save One Life, which serves over 1,000 people with hemophilia who live on about $1 a day.
While in Argentina, Chris also hopes to meet the Hemophilia Foundation of Argentina, one of the world’s first hemophilia nonprofits and one of the best run. Carlos Safadi, a lawyer with hemophilia who sits on its board, also serves on the executive committee of the World Federation of Hemophilia. Carlos writes, “It will be my pleasure to welcome Chris to the Foundation.”
Check out www.adventuresofahemophiliac.com to read more about Chris and his momentous climb! And show your support by making a donation in any amount to Save One Life! www.saveonelife.net
Great Book I Just Read
Buried in the Sky: The Extraordinary Story of the Sherpa Climbers on K2’s Deadliest Day [Kindle]
The worst accident in the history of climbing K2, the second highest mountain in the world but known as the most treacherous, happened on August 1, 2008, when 11 mountaineers from international expeditions died. What sets this true story apart from other mountain climbing stories is that it is told primarily from the sherpas’ point-of-view. The authors get inside the mind-sets of the sherpas who brought the many clients up the mountain that day; their lives from childhood are replayed, revealing their sterling character, and how most escaped dire poverty to become rock-stars of the climbing world. But the “goddess” of the mountain had other plans for the unlucky climbers: reaching the summit too late in the day, the return became a race against the dark, the cold when disaster struck. An avalanche buries the lead ropes, scattering the climbers, leaving some suspended upside-down all night long, others to walk over the edge, and still others to abandon their fellow climbers. It’s a tragic tale, masterfully told with great compassion and in-depth focus on each individual. Most fascinating to me were the many references to the Nepalese sherpas’ faith in the goddess of the mountain, and the Pakistani guides’ Islamic faith and how their faiths led them to assist the many climbers and other guides in trouble, putting their own lives at terrible risk. This story of heroism and yes, hubris, was a page-turner, and I finished it in two nights. Four/five stars.
I attended the annual National Hemophilia Foundation meeting from November 7-11,
as I have done since 1992 faithfully. As usual it was filled with interesting
sessions on treatment of hemophilia, attractive displays of company booths and
wonderful reunions with many friends and colleagues. But something new: in his
opening speech, NHF CEO Val Bias, a man with hemophilia and one of the foremost
advocates in helping to get the Ricky Ray Law passed, spoke about uniting our
communities globally. This is the first time I believe that NHF has shown a
targeted interest in helping the world’s 75% with hemophilia who have little or
no access to care.
Laurie with Nancy S., who has a child with VWD
This was exciting to me as I have been working to help the underprivileged with hemophilia since 1996. First with a leadership training program called
L.I.G.H.T., then a factor donation program called Project SHARE, still ongoing,
and my nonprofit Save One Life, which sponsors children overseas. I was
thrilled that NHF would bring its resources and brainpower to help those in
need.
Why not before now? Timing, focus. We have been through many phases: the contamination of the blood supply and subsequent infection of thousands occupied our time and focus for years. Then came product shortages. The inhibitors. Even NHF had its own problems internally and struggled to assess leadership (CEOs came and went) and structure. That seems behind us now. And with Val’s leadership and vision, NHF turned its powerful eye overseas, especially to Africa.
Val Bias and Neil Frick visited Nigeria in September, marking the first time that someone from NHF has been to Africa! I’ve been traveling there since 1999, when I first visited Zimbabwe and Kenya, and am returning on November 30. Finally, finally America is showing its leadership and true giving nature in joining the international community and participating in partnerships that will help
hemophilia nonprofits and its members in developing countries.
Meeting FB friends: With Liz Purvis and Tater!
Val has bigger plans: the 2016 NHF meeting will be held in Miami, and Miami was
also selected for the 2016 World Federation of Hemophilia biennial meeting.
This means that attendees to either meeting can also extend their visit and
join the other meeting. WFH gets about 4,000 visitors and NHF gets about 2,500.
This would potentially be the biggest meeting on hemophilia in history, and on
American soil.
I really applaud NHF becoming involved globally. The world needs it and it’s good
for us. I’ve always felt that we have more than enough to share, if we can just
find ways to do it. With NHF’s power, hemophilia care globally can progress at
a faster pace to reach more in need, an estimated 300,000 who suffer from this thoroughly
treatable disorder.
With Gary Cross (L) and Dana Kuhn, of PSI
And looking at all the photos from NHF here, I realize that almost evey person pictured either sponsors a child with hemophilia or VWD in a developing country through Save One Life or has contributed in some way to Save One Life or Project SHARE. From summiting Kilimanjaro to raise funds, to making handicrafts that support a child, to sponsoring one directly, Americans have already been uniting globally—and now can take pride that their national organization will as well.With Reid Coleman of NC
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