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)
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.
With Dr. Timothy Stamps, personal health advisor to the president
I’m in Zambia, Zimbabwe’s huge neighbor to the north, having a hot tea on the deck of my lodge room on the
banks of the Zambezi. The sun is a scorcher today, the air humid as if someone
dropped a huge, wet blanket over the atmosphere. While I see Africa’s beauty
before me, I’m haunted by the image of an African boy in Zimbabwe. Though I
left Zimbabwe on Wednesday, my mind still drifts back, wondering what to do.
I visited Zimbabwe from December 1-5, and Zambia from the 5th-10th, tomorrow. I’ll write about
Zambia next Sunday and finish Zim here.
ZHA members with Mr. David Mvere, director of National Blood Transfusion Services
The Health Minister was unavailable to meet, but we did get to meet with the personal health advisor to the president, the charming Dr. Timothy Stamps, who I have met twice before. We chatted about
hemophilia, and it’s good to have someone like him in government who knows about it. But even more important, we have the National Blood Transfusion Service, which is really the backbone of hemophilia care in Zimbabwe. David Mvere, the director, is an advocate for those with hemophilia—and always ready to help us when we have product to donate. I’ve met him several times over the past 12
years. We will work together to see if we cannot move hemophilia care forward in 2013. What’s needed is a national “tender,” in which the government advertises that is has so many dollars to spend on hemophilia products. The drug companies then bid for the sale, keeping their proposed price tags secret from one another so the government can take advantage of the lowest price/highest quality drug. Zim hasn’t had a tender in almost 20 years, I think.
ZHA, Laurie and Dr. Dyana (center) at Parirenyatwa Hospital
The rest of my time in Zim is spent advising the Zimbabwe Haemophilia Association on
best practices and providing an assessment of what they need to function more effectively and produce
results.
And then, there are the hospital, home and family visits. Last week I told you about Brian, an orphan who lives in a mud walled, maize-thatched circular room outside of Harare. We also stopped by the Parirenyatwa Hospital, the main public hospital in Harare, where some
patients go for treatment. Little Brian had been admitted. Simbarashe Maziveyi,
the ZHA president, chatted with him in Shona, the native language to learn more
about his case. Simba would have made a great professional counselor; his calm demeanor, listening skills and reassurance touch everyone.
Simba, ZHA president, counseling Brian
We meet with Dr. Dyana, the Cuban
hematologist who chose to stay in Zimbabwe to help cancer and hemophilia
patients. Thankfully she did because Zim suffered for many long years without a
single hematologist in a country of approximately 500 patients.
Then we drove out into the bustling Harare traffic (that’s a good thing here! Shows progress) We visited Vincent, a 33-year-old with hemophilia, who
also happens to be a Save One Life beneficiary. He lives with his wife and small daughter in a 12×12 room—just a room—with all his worldly possessions: a small TV, some clothes, a few books. He has not worked since January, and you can see the anguish in his face. How do they eat? Where do they get money from? Save One Life gives him some cash. His sister lives nearby and helps out. But they are desperately poor. Vincent does own a bicycle, which he proudly shows me. He can bike to the treatment center when he has a bleed.
This must sound absurd to the average American with hemophilia! But it is a survival tactic in Zimbabwe. And when Vincent gets to the treatment center at the Parirenyatwa Hospital, there usually is no factor, of course.
Simba interviewing Nhamo
We drive to see Nhamo, a 41-year-old man who has come from very far away by bus. He’s had an ulceration and bleed on his left hip for months. The tissue has died and needed to be cut away. The wound can’t seem to heal and there’s no more factor. He’s now staying with his sister in a small room on someone else’s property. His crutch is homemade–a stick. He can’t work, can’t heal… this story is repeated many times in Africa. Luckily, we do have factor for him. Then he shows us his hospital bill: $2,500+ dollars.
Talk about out of pocket costs: how is
a destitute guy from a rural area ever going to pay this off? Might the hospital
refuse him treatment if he doesn’t pay? Maybe. Simba pledges to go talk to
officials on his behalf. This is really the value of going to visit patients.
The founders of the Flying Doctors of Africa (now AMFAR) once said that if you
want for patients in Africa to come to you, they’ll die; you need to go visit
them. I take that to heart.
Last stop of the day is Tanaka, from a family I have known for 11 years! Tanaka is adorable, charming, bright. And a hugger. Hugs are not a real tradition here, but Tanaka sure loves it. The whole family and I embrace one another at our reunion. They present me with a beautiful blanket with an elephant on it. Tammy from Texas sponsor Tanaka, and the money really helps him. Tanaka flashes me his trademark megawatt smile when it’s time to leave.
Tanaka gives his sponsor a gift!
On Tuesday we have a patient meeting,
with as many families as possible in attendance. Some have come from hours away
by bus. Many are in pain, seeking relief. Some of the moms are single, and
confide their fear about how to get financial relief, and how to treat bleeds.
Someone asks about a cure; another about gum bleeds.
One enormous obstacle in any developing country is infrastructure, particularly transportation. Even if factor were available, many cannot get to it as they can’t come to Harare each time their child has a bleed. I’m convinced the only solution long term is home therapy, which doesn’t exist in most developing countries. As many of the moms nod their
heads, we ask for a volunteer among them to organize a home-infusion training day. It’s a go, and the moms pledge to get together; the wife of one man with hemophilia is a nurse and she offers to be trainer. It’s a positive thing to at least start with.
On Wednesday, as I prepare to leave for the airport, Simba begs just one more visit. Often it’s when I am feeling tired, burned out just want to get on with the next leg of the journey or even go home, that the most important child is met. This happened Wednesday.
Vincent and family: out of work but not out of hope
We drive back to the Parenireyatwa Hospital, to the front of the shed where the ZHA offices are. There sits a little boy that immediately brought to mind the words of Frank Schnabel,
founder of the World Federation of Hemophilia: that patients with hemophilia were “human pieces of geometry” stuck in a wheelchair. Only this little triangle boy didn’t even have a wheelchair.
Brian is 13, but only weighs 25 kilos, about 50 pounds. Malnourished, in horrible chronic pain, he sat in the brilliant sunlight with swollen feet, four grotesquely swollen fingers, withered biceps—I could touch my forefinger and thumb around them easily—huge elbow joints (or was that an optical illusion due to the wasted musculature?). His face registered such pain; and he was wearing a Jim Morrison t-shirt, as if he knew I was a huge Doors fan and was desperate to get my attention.
My heart broke for this child, an orphan, being raised by his grandmother in a rural village, where he will no doubt be blamed for this disorder because of witchcraft. When I asked Brian to lift his arm, to see if he could at all extend it, he had to lift it at the shoulder, but lacked the muscles to lift his arm, and was prevented from
searing pain.
Brian steals our heart: he’s an orphan, can’t walk, or lift his arms and is in constant pain
I have never seen a child tortured before, but this was as close as I could imagine to seeing it. Simba, voice calm and soothing, elicited the necessary information, and we arranged for Brian to be admitted at once, and provided the factor. In the States, Brian would face months and months of treatment, nutrition and rehab. A Facebook posting that night led to three families wanting to adopt him, and more who want to sponsor him. We even asked Simba that night, but no. “His family could not possibly part with him,” he texted.
It’s comforting to know that Brian is loved, but it eats at us that our children in developed countries enjoy every benefit of medicine and can lead normal lives. Brian is stuck in a time-warp: care will come to Zimbabwe, of that I am sure, but not perhaps in time for this
one precious child.
Laurie, Simba speaking with Brian’s sister, “Beauty”
A great goodbye from the Youth Committee of the ZHA
At Thanksgiving last week, my family gathered for dinner and in swapping motorcycle and adventure sport stories with four of my six brothers, someone remarked about the “adrenaline junkies” in the Morrow family (my maiden name). True, but I reflected our hemophilia community has a few of those as well. This summer we watched Barry Haarde bicycle 3.677 miles across America to raise funds for Save One Life, my nonprofit that supports kids with hemophilia in developing countries. And we saw Eric Hill and Jeff Salantai of BioRx scale Pico Duarte, the highest peak in the Caribbean, to raise money for the Dominican Hemophilia Camp, which Save One Life supports.
And last year I summited Mt. Kilimanjaro with eight others, including Eric and Jeff, to raise over $66,000 for Save One Life. Now, Barry and I just jumped our of a plane last week at 18,000 feet, but we didn’ raise any money–it’s an idea, though!
But you don’t have to be an adrenaline junkie to help support a good cause. Try walking!
Bayer has just announced the winners of its virtual walk, a successful fundraising efforts to help hemophilia chapters and–I am grateful and proud to say– also Save One Life. (www.saveonelife.net) See below, register for next time and then… take a hike!
The 2nd Annual Virtual Walk for Hemophilia is proud to announce the top 5 participating local National Hemophilia Foundation (NHF) chapters who rallied the most virtual walkers!
First Place with $15,000 in sponsorship funds:
Arizona Hemophilia Association
Second Place with $10,000 in sponsorship funds:
Bleeding Disorders Alliance Illinois
Third Place with $5,000 in sponsorship funds:
Texas Central Hemophilia Association
Fourth Place with $2,500 in sponsorship funds:
Nevada Chapter, National Hemophilia Foundation
Fifth Place with $1,000 in sponsorship funds:
Nebraska Chapter, National Hemophilia Foundation
We, at Bayer, are delighted to provide these chapters with sponsorship funds to continue their hard work in supporting the bleeding disorder community.
Furthermore, we are privileged to present the National Office of the NHF in New York with $30,000 in sponsorship funds to assist them in continuing to improve and enhance the lives of those who live with bleeding disorders. And we were able to provide $7,000 in sponsorship funds to Save One Life, a non profit organization that offers the opportunity to sponsor a child or adult with a bleeding disorder in a developing country.
Thank you again for making this Virtual Walk possible!
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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Barry the Biker is at it again…. riding clear across America to raise money for and public awareness of hemophilia!
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.
