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.
Chris Bombardier has a soft-spoken demeanor, but has the heart of a lion. He just bagged his fourth summit, in his attempt to be the first person with hemophilia to conquer the Seven Summits—the highest summits on each continent.It was a tough, grueling climb, the hardest one he has done to date, he confided, and that’s saying a lot. But the outcome was worth it!
Three more to go, the last being the breathtaking Mt. Everest. Congratulations, Chris!
Chris’s climbs benefit Save One Life, the nonprofit I founded to help children with hemophilia in developing countries. So he not only climbs for personal challenge, but to advance hemophilia care for those who have none. Heart of a Lion!
Please read this excerpt from his blog, and visit “Adventures of a Hemophiliac” to read the rest of the story, and about his upcoming climbs! (Thanks SO much to ASD Healthcare, Reliance Factor of America and BDI Pharma for supporting Chris’s climb!) Visit www.SaveOneLife.net to learn more.
Denali/Mt. McKinley Part 2: Lower Glacier to 14,000ft
Submitted by Chris Bombardier on Thu, 2014-07-31 09:09This year, Denali lived up to the hype of brutal weather. Summit rates plummeted from the typical 50% to the low 30% when we arrived in Talkeetna, and having a HUGE snow day so early into the trip made us all a bit concerned. After our snowshoe fun we discussed our plan of action. Our amazing guide Melis decided we needed to wait for the snow to settle before heading up the mountain. Not only would this lessen the danger of avalanches, but also make travel over the feet of new snow easier. Another group had different plans and wanted to move as soon as the snow stopped and the clouds cleared. We saw them struggle past our camp and begin the ascent of Ski Hill. Hours later they were still in sight. It took them 6 hours to reach a point that only took us 2 hours a few days before. I was so glad our guide made the decision to leave bright and early the next morning.
We woke up at 3 A.M. the following day and the weather looked great. We packed up camp, organized all our gear, and headed out. Luckily, the team that left the night before broke trail up Ski Hill and we moved quite easily. We found the other group camped not far from where we last saw them. They must’ve been exhausted and had to camp there. Another AMS team left a few hours before us so the trail was also broken most of the way. About 3/4 of the way to 11,000 camp we passed the other AMS team descending back to Camp 1. They cached their gear and were heading back for the night. From there on out it looked like we would be breaking trail. Melis lead to the cache and when we arrived we decided to pick up ALL of our gear and head up the final hill. I was feeling good until this point. Then things changed quickly.
From the cache we only had a few hundred feet of untracked snow to make it to the rest of the trail. These few hundred feet were the worst of the entire trip. I was second on the rope team following our guide Mike. He charged into the fresh snow and was moving quickly. I was trying to step opposite of him so that the snow would be packed down evenly for the others. It was brutal! We were sinking knee deep in snow on snowshoes! I think I would’ve been able to handle it but the pace was too fast for me. Instead of asking Mike to slow down I tried to tough it out. I failed. By the time I said something my legs were dead and we still had the entire hill left. The next 2 hours were brutal. I asked for more breaks and my legs finally came back. We made it to camp and I hoped that was the worst day I would have on the mountain. I knew from then on I would be more vocal about how I was feeling. There is no shame in asking for a break or slowing down the pace a bit.
We had a much needed rest day after our move to 11,000ft camp, at least much needed for me. It was an infusion day and I really wanted to do it outside with the amazing views around. Unfortunately, the weather didn’t cooperate and I was restricted to my tent. The infusion went well and I was ready to roll for our next trip up the mountain. If you want to see the video of my tent infusion check out my Facebook page.
With my body restored I was ready to tackle our next goal, caching gear near Windy Corner on the trail towards 14,000ft camp. We ditched the sleds for this part of the climb which was amazing! I would much rather have a heavier backpack than pull a sled. At this point of the trip we really started climbing the mountain and weren’t just making the approach. Distances between the camps weren’t as great but the elevation gain was pretty much the same. Our first obstacle was Motorcycle Hill. This is where I really felt like I was climbing a mountain. The terrain started getting steep and strangely I started to feel stronger. We knocked out Motorcycle Hill quite nicely and turned up Squirrel Hill. As we were climbing Squirrel Hill our guide informed us of the massive cliff just out of site. That definitely heightened my senses and made me focus even more on every step. A massive avalanche slid over a cliff on the other side of the valley. I have never been so close to a slide and you could really feel the power of it. It was a great reminder that the mountain is always in control.
The weather kept improving throughout the day and when we cached we had an amazing view. It’s always an amazing feeling being on a mountain above the clouds. After we buried our cache we headed down. As we descended Squirrel and Motorcycle Hill I was in the lead of our group. The view was absolutely breathtaking and up to that point, it was my favorite day on a mountain. I felt strong again and confident that this was going to be a great trip. That night we got word that another storm may roll in. We built up wind walls around our tents and prepared to be there for awhile.
The wind picked up overnight and some snow fell but it wasn’t as bad as we thought, but still not great to move in. Melis thought we were going to be stuck for the day until the clouds suddenly started to break. Our guide made a few satellite phone calls to make sure this break would last and decided we needed to pack up and go for it. We took down the tents in the late morning and were on our way to 14,000ft camp just after noon. The trail was harder due to the new snow but we still made great progress. As we reached the top of Squirrel Hill the wind started to pick up and we knew we needed to get around Windy Corner as quickly as possible. Lets just say I get why they call it Windy Corner. We didn’t pick up the rest of our cache this time but we did stop and grab our helmets off the top as we passed the corner. The wind was howling. I grabbed my helmet, continued walking, and then waited for my teammate behind me to put his helmet on. It seemed like it was taking forever. As I glanced back to see what was going on, a freezing gust of wind and blowing snow slammed against my face. I could barely make out my teammate and just turned my back to the wind. The next 10-15 minutes of climbing around Windy Corner were brutal. Then as we crossed onto the 14,000ft side of the corner, the mountain turned peaceful. It was an amazing transformation. We continued on to camp which was still a few hours away. We pulled in around midnight, set up camp, cooked some food, and crashed hard. Another tough, tough day on the mountain. We were now in a fantastic position to get up the mountain and I really felt great at this point.
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 dream come true for me— Rwanda. This trip happened to coincide with the
twentieth anniversary of the start of the genocide, April 1994. I recall
vividly watching my TV each day, holding my newborn, Mary, and helplessly
comparing her blessed life with the sufferings of the refugees in Goma, and
those trapped in their villages and in the capital, Kigali. The genocide went
on for three months while the world mostly watched, indifferent, unbelieving,
and immobile. It was then and there that I resolved to do something to help those with hemophilia in other countries. Later, Save One Life was born.
Things have changed in Rwanda, which is one of the prettiest and cleanest of all the developing countries I have seen. The country has been reborn, and money is poured into healthcare. But one of the rare disorders that gets no funding or attention is hemophilia. That’s about to change.
First some facts:
Rwanda is one of the smallest African countries, located in eastern
central Africa, about the size of my home state, Massachusetts. Nearly half of
its 11 million people live in Kigali, the capital. Colonized by first the
Germans, then the Belgians after World War I, it is an independent state now
where English and Kinyarwanda are spoken. About 95% of the population is
declared Christian.
“Land of one thousand hills”
The current GDP (“income”) of Rwanda is about $15.7 billion, which ranks it at #141 in the
world. Average income is about $ 600 a year. And about 45% of the population
lives below the poverty line.
Farming impacts 80% of the population. Most crops are for internal consumption, with
only tea and coffee being exported. Thanks to the wild mountain gorilla
population, tourism is the number one industry, with farming a close second.
Life expectancy at birth is 64 years, ranking Rwanda about196th in the world.
Dinner at Dr. Fabien’s House
My first impressions were all positive of this enchanting African land. I looked
at the stunningly beautiful pastoral vista: rolling hills, tiered like a cake
with green frosting, all farms and crops. Patched-worked in were squares of
other crops: banana trees, sugar cane, pineapple, sorghum. And everywhere
people walk, balancing great loads on their heads. Even the children: their
faces disappear under great loads of bamboo, until they resemble huge bails of
greenery with legs. Or small children struggle to haul water jugs back to their
homes. Infants are wrapped and tied onto their mother’s backs, asleep. Women
work hard here. Men push bicycles up hill, with a towering 50-lb sack of
potatoes or yams. The children wave at me and say “Allo!” A huge field in the
foothills is dotted with colorfully clothed Rwandans chopping and turning the
earth with hoes; backbreaking work.
For this blog I’ll write about our meetings with the hemophilia team. In Part 2 I
will cover the visits to the Genocide Museum, churches and then the Mountain
Gorillas. Because to know Rwanda, you must know more about the Genocide, and its natural wonders which attract people from around the world.
The lone machine at the lab
On Sunday night, April 20, Maureen Miruka and I were invited to dinner with Dr. Fabien Ntaganda and his family at his home. Dr. Fabien
is a young hematologist and the only hematologist in a country of 11 million.
He had just recently returned from training in South Africa. His daughters
Alegra and Farley were charming and we enjoyed conversing with them.
Dr. Fabien with Laurie Kelley
Maureen is president and founder of the Jose Memorial Haemophilia Society-Kenya. She has a son, Ethan, with hemophilia, and was compelled to found this
patient-centric organization after her other son Jose died. After knowing her
and working with her for several years, I asked her to accompany me on this
trip to create a bridge between the two countries. To me, it’s silly to have
African nations reaching out to the West constantly, and for us to help
unilaterally, when Africans can share and should share with one another.
Maureen would have much wisdom and experience to share with the patient group the next day.
On Monday April 21, we met at the Rwandan Military Hospital, where Dr. Fabien
works, to meet with many doctors of different disciplines. I gave a talk about
the need for leadership in starting a hemophilia foundation and also in
changing history—here, to create a hemophilia program that addresses problems medically and socially.
Maureen gave a presentation of her own story that led her to create the JMHS-K, and how nit is impacting lives there now.
Afterwards we toured the pediatrics ward, meeting two pediatricians who told us about their encounters with hemophilia patients. Treatment? Fresh frozen plasma. Not even cryo. The first use of factor concentrate was December 2012, when a
donation from the World Federation of Hemophilia was received! December 2012!
Maureen Miruka with Dr. Fabien and pediatricians
This fact jars remarkably in a country where The Clinton Foundation
is deeply involved, where health expenditures are 10.8% of GDP, placing Rwanda at 17th in the
world, where HIV prevalence is 3%, one of the lowest rates in Africa.
The government views healthcare as a human right. With over 400 health care facilities, 42
district hospitals, and 45,000 community health workers providing care are the
village level, Rwanda has created a system to bring health care to both its
urban and rural populations. Yet, life expectancy is only 64 years (and lower
for men).
Hemophilia most certainly contributes to this low life expectancy.
And with a
population of 11 million, there should be about 400-500 with hemophilia. Yet
only 27 have been identified. Dr. Fabien showed us the blood lab, where a one
humble machine stood. Rwanda needs a proper diagnostic facility, in order to
test those with factor VII and factor IX, those with inhibitors or von
Willebrand disease.
The pediatric wards were bright and cheery, with beautiful beds (so remarkable not to see chipped paint, stained walls, overcrowded facilities) and clean floors and walkways.
Our driver, Lucian, took Maureen and I back to the hotel after this, where we had
lunch together, and then waited for the parents/patients to show up at 2 pm for
our first meeting of the Rwanda Federation of Hemophilia. This group was formed
in February 2013, but in actuality, nothing has been implemented or become
official. The group is not registered as a proper nonprofit with the
government, which then prevents it from participating with the WFH and
receiving the resources it needs and deserves. Our mission is to get the group
together, sort out why it has not been registered, get it registered, and get
it moving, according to the tenets of my book, Success as a Hemophilia Leader.
Fred and Prince
Attendees
included: Emmanuel, Alyos, and Sylvestre, all fathers of children with
hemophilia; young people Fred and Prince, brothers, and their mother. Prince, age 15, was on
crutches and needs to have x-rays to determine if surgery is possible to fix
his patella, which was knocked loose during an accident. Dr. Fabien, in spite
of all the work he has to do, had done his part and got this community
together, bless him. We met for over an hour, talking about what needs to get
done to get this new initiative moving. We ordered soft drinks and African tea
for everyone. Maureen’s lecture on what she has accomplished with JMHS was
superb and opened their eyes to possibilities—what they as a group of patients
and parents can accomplish. As an African, she can communicate with them as I
cannot; she has that credibility that I don’t.
Right then we discussed their
constitution (It needs reviewing as it’s been a year); temporary elections were
needed today, now, to get leaders in place (done!); priorities need to be
established (blood diagnostic lab and registering the society). We accomplished
all that. Fred, only age 21, took the Minutes. We were having our first proper
meeting.
It was a good meeting, and maybe even a bit intimating, as we contemplated all
that needs to be done.
On Tuesday, Maureen headed back for Kenya, and I had a day off to read and organize notes from my hotel room. Later that day, Dr. Fabien and I met with the Health Minister, the Honorable Dr. Agnes Binagwaho, who was appointed in May 2011. The Health Ministry is located in a commercial building, and we waited about an hour until she was done with her
other guests. A pediatrician, the Minister of Health understood about hemophilia. I showed her photos on my laptops of some severe cases. And then we cut to the chase.
Emmanuel, new president
Incredibly, Rwanda
offers health care for all individuals to access medical services, currently
95% of the population have access to insurance (current annual insurance cost
is approximately $5). Medicine is sold at pharmacies, and patients get reimbursed
about 80% through the government. Could this be done with factor?
No, she said.
It would overwhelm the system and is too expensive. And honestly, I thought,
asking parents and patients to pay just 20% of the costs would wipe them out.
So there is no easy solution for treatment of hemophilia in Rwanda. Yet,
Barbados, a small Caribbean country, purchases factor; Honduras, one of the
poorest countries in the Western Hemisphere, purchases factor. How can we move
other countries in the same direction?
It takes a
structure fortified by the patients, families and physicians (the Rwanda
Federation of Hemophilia; it takes help from the outside world (the WFH and
entities like us and the JMHS-K); and it takes time. And over time, Rwanda will
achieve self-sufficiency.
Our meeting was pleasant and gave me a better picture of the challenges we were up against. But as I watched in later days, the women walking miles carrying heavy burdens on their heads to market, the children who were dwarfed by the huge bundle of sticks they carted about on their backs, I know that this is a country ready to work for its daily bread, its dose of factor. It has overcome much already, and will over come the new challenges too.
Laurie Kelley with the Hon. Dr. Agnes Binagwaho
To quote the country’s president, Paul Kagame, who led the revolt against the government during the civil war/ genocide, from an article he wrote in the Wall Street Journal recently, “As we pay tribute to the victims, both the living and those who have passed on, we also salute the
unbreakable Rwandan spirit, to which we owe the survival and renewal of our
country…” Think of the victims as those with hemophilia, and you can parallel
that we will succeed one day in providing hemophilia care to a nation that has
already suffered enough.
Great Book I Just Read
Shake Hands with the Devil by Roméo Dallaire
Dallaire was
the head of a UN peacekeeping mission during the 1994 civil war/genocide, in
which 800,000 Rwandans were slaughtered in three months. The book is not a
reporter’s eye-witness account of atrocities: it is a moment by moment, blow by
blow, insider leader’s view of the events leading up to the April 6, 1994
assassination of Rwanda’s president, the internal struggle to get the Arusha
Peace Accord finalized, the mobilizing of anti-governmental forces, the power
struggles between the Tutsi and Hutu tribes, the political players, and more. Dallaire
gives an exhaustively detailed account of what went on politically before
during and after the Genocide, both inside the country and globally; how the UN
on the ground reacted and the indifference of the world. It is a scathing
indictment of the bureaucratically hampered United Nations, the hesitant United
States and the self-serving Belgians. While the world watched, hundreds of
thousands of Tutsis and moderate Hutus were macheted and mutilated. How
Dallaire coped with the lack of resources, the suffering of his own troops,
constant gamesmanship of the players involved, death threats, lies from
politicians, and being surrounded by death and suffering of women and children
is nothing but heroic. He is a hero, and did his best. It is an exhausting book
to read in many ways, yet must-reading for anyone involved in charity work, war
time missions, history, the military, and huge international bodies like the
UN. So many lessons to be learned; Dallaire has done the world, history and
future citizens a vital service in providing this book. It should be a military/humanitarian
classic. God bless him. Five/five stars.
As World Hemophilia Day was celebrated in many countries, I chose to spend this year’s WHD in Kenya, a country I have been visiting since 1999. The nonprofit I founded, Save One Life, has three programs here—microgrants, scholarships and sponsorships—each touching directly the lives of many children and young men
with hemophilia.
The day was organized by the eloquent Dr. Kibet Shikuku, a hematologist at the Kenyatta National Hospital in Nairobi, and James Kago, a young man with hemophilia. Dr. Kibet welcomed about 70 family members—parents and children with hemophilia or von Willebrand disease. The day provided an overview of hemophilia for the press members present, the needs of
Kenya, and words of wisdom for moving forward from this day.
“My prayer today,” Dr. Kibet invoked, “is that we walk forward as a group, so we can advance the issues that affect us. We are one body with different endowed parts. We want to be worthy partners for better hemophilia care in Kenya.”
One main goal is to ensure better diagnosis, he added. With a population of 43 million, Kenya should have roughly 3,000- 4,000 with hemophilia. About 400 patients were identified at one point (meaning they came in at one time in their lives for treatment), but the numbers are not reliable. Only about 50 patients are regular visitors to the treatment center.
Other take aways from Dr. Kibet: “We Kenyans we have every right to be provided for by things that affect us with hemophilia. We must take charge of our own destiny. Togetherness will make us strong. Speak with one voice! We must lobby the government to support testing and availability of factor. Time to speak out and speak up about hemophilia: our community, our accomplishments, our needs.
Speak Out, Create Change was the slogan for World Hemophilia Day, the April 17 event that commemorates the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who envisioned our global community working together to improve care.
Speak out… for kids like Emmanuel
Kibet thanked the WFH and Project SHARE for their support of donated factor. He also
thanked donors in US, especially those who support Eldoret project, like the
Indiana hemophilia treatment center and Novo Nordisk Haemophilia Foundation.
He also thanked the Jose Memorial Haemophilia Society and showed a photo of a man
who was in bed for four days with a severe bleed. The JMHS provided him with a donation
of factor.
He noted that there is simply not enough factor; once Kenya secures enough
regularly, then it can offer home therapy.
This is a huge point. Kenya is large, and roads can be difficult. Most patients
living in rural villages have no way to get to the treatment center in Nairobi,
the capital, or can afford transportation. I know first-hand as I have
traversed these roads quite a few times. Imagine taking a public bus, crowded,
hot, hours long, with a painful psoas bleed or worse.
Emmanuel
James Kago
The audience really responded to this idea and asked about home therapy… hoping that someday, someday speaking out… will create change.
Kenya has come a long way, and I was very excited to see at this meeting more change is afoot, all for the best, to create the kind of unity and one voice Dr. Kibet mentioned.
The informative meeting was concluded and a delicious lunch served outside on the hospital grounds. I was able to hang out with a few of the boys I’ve known for years and years: Jovan, Peter, Charles (who has a baby now!), Emmanuel, John.
Lucy Kago asks a question
Mrs. Mwangi and Stephen
Moline Odwar and Laurie Kelley
John with Laurie Kelley
Simon, Laurie Kelley, Peter
Laurie Kelley with Lucy and son Simon
Peter, Maureen Miruka, Jovan Odwar
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