January 2013

Eye on the Summit!

This is 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

Chris knows something about that. He sits on the board
of my nonprofit, 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 the
Ameghino/Upper Guanacos route with a traverse and decent down the normal route.
He’ll be climbing with two guides and eight other climbers. Chris’s climb is
being funded by LA Kelley Communications.
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.”
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
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. 

Scholarship in Honor of a Great Lady: Soozie Courter

Sorry I am so late with this blog. I was down with the flu all last week. Massachusetts has been hit particularly hard this year! Get your flu shots everyone!
Last week I blogged about a great scholarship from Baxter. This week I want to let you know about another from Pfizer.
Pfizer Hemophilia is excited to announce the launch of the new application period for the Soozie Courter Hemophilia Scholarship program.  I am honored to say that I knew Soozie from long ago, and she actually lived in the next town over from me. A wonderful woman, devoted to her work in the hemophilia community, who left us much too early.
Pfizer Hemophilia awarded more than $50,000 in scholarships for the 2012-2013 academic year to students in the hemophilia community, illustrating Pfizer’s long standing pledge to help patients with bleeding disorders attend college and further their education. Congratulate all of last year’s winners!

These scholarships are intended for U.S. applicants with hemophilia A or hemophilia B who present the best combination of a creative and persuasive essay, excellent recommendations and superior academic standing.  Sign up now to be eligible for the Soozie Courter Scholarship. All applications must be received by no later than May 24, 2013. Scholarship winners will be announced in July 2013. For more information or to download an application, please visit: www.HemophiliaVillage.com.

Great Book I Just Read
Explorers of the Nile: The Triumph and Tragedy of a Great Victorian Adventure by Tim Jeal (Kindle) 2011
I’m a huge fan of reading about African exploration, and discovered this comprehensive gem recently. This book covers all the key players in mid-1800-early 1900 who put their lives on the line to explore Africa’s interior. From David Livingstone’s failed Zambezi exploration to Richard Burton and John Hanning Speke’s joint quest to find the source of the Nile, and their subsequent falling out, to Samuel Baker and attempts to colonize Africa, to the brash Henry Morton Stanley–arguably the most accomplished of them all–this 500-page, exhaustively researched book details the horrors, the triumphs, the Royal Geographic Society politics, the men behind the funding. Different than most other books I’ve read, this one greatly details the coordinants and pathways each explorer chose in their search for the Nile’s origins. It was a bit overwhelming at times! I was deeply impressed by the amount of research Jeal did, and how he faithfully records his sources. Less impressive is the axe he grinds against Richard Burton, who was glamorized in the movie “Mountains of the Moons,” making Speke the inferior and petty man. Jeal found just the opposite and lauds Speke, idolizes him really. I just found the comparisons as to why Burton should not be lauded a bit over the top and personal, and detracting from this otherwise exemplary book on adventure, exploration and colonization of Africa. Four/five stars!  

Get the Education Advantage

Did you know that LA Kelley Communications had the very first on-line listing of national scholarships? We started this many years ago, and now update it yearly. Go to our scholarship page to learn more. But this week I want to highlight one right here.

For the fourth consecutive year, Baxter Healthcare Corporation is sponsoring the Education Advantage scholarship program for hemophilia A patients. Baxter has increased its funding of this program year after year.

date, 104 scholarships have been awarded, totaling $565,000. Students working
toward a bachelor’s degree are eligible for up to $15,000 per year. Students
seeking an associate’s degree or pursuing a technical/vocational certificate
program are eligible for up to $2,500 per year. Scholarships are renewable for
up to three years or until the student finishes school.

The program is administered by
Scholarship America, the nation’s leading
non-profit scholarship administrator. Scholarship America is solely responsible for
reviewing all scholarship applications, determining financial need and
eligibility, and selecting scholarship recipients.

The Education
Advantage program will start
accepting new scholarship applications on February 1, 2013.  Completed applications are due
to Scholarship America and postmarked by April 1, 2013.
The program goes beyond financial aid with resources
to help people with hemophilia A get more out of life,
including education
planning, career development, health management and community
For more information on the program, visit www.thereforyou.com/educationadvantage or call Scholarship
America at 877-544-3018.  
Interesting Book I Just Read
Confessions of a Public Speaker by Scott Berkum (Kindle)
Scott Berkun may be a professional public speaker, but
speaking and writing are two different media. This book is a mixed bag. He
shares his own career as a public speaker, trying to be part comic and part
storyteller, but neither really works at first. The opening chapters are awkward
and clumsy, with repeated references to aliens and spaceships for some reason. Lots
of the information he shares is info you can get from much better written
books. But midway through the book it does get more interesting. It becomes
less about his direct experiences (which are kind of lame) and more about the
psychology of presenting, listening and delivering. I found the chapter on TV
and other media interesting (perhaps because I don’t do a whole lot of that and
wanted to know more).
Know that at least one-third of the book is appendices.
These contain good condensed information. I didn’t like his use of profanity,
and wondered what kind of a speaker teaches about what to beware of when he himself swears! Unless you know your audience intimately, unless you are on the level of a
Steve Jobs or Bill Gates, or unless you are a comedian, never use profanity for
risk of alienating your audience. Two and a half out of five stars.

A Camp to Call Their Own

By Janet Brewer
The bleeding
disorder community is small, comparatively speaking. Smaller still
is the community of families and individuals affected by an inhibitor. But what
we lack in size, we make up in our voices.
The hemophilia community has advocated for better care, better products and better programs to
support our daily needs. As a result, we have arguably
the best treatment model in the world. In the last 20 to 30 years, hemophilia has
realized a standard of care that involves routine prophylaxis. This 2-3 day per
week regiment enables most affected by hemophilia to lead a relatively “normal”
life. Annual chapter meetings, national education conferences offer a plethora
of information specific to those living with hemophilia. Week long summer camp
programs where self-infusion is taught and opportunities to meet peers in an
environment that promotes leadership are a right of passage for our community.
Yet the smaller
subset of individuals and families affected by an inhibitor continues to
struggle. An inhibitor diagnosis changes the entire landscape of hemophilia
treatment. Routine prophylaxis becomes a thing of the past until the inhibitor
is tolerized. Immune tolerance treatment (ITT) can take years of daily,
sometimes twice daily infusions and even then, not every child becomes
tolerized. There is no single factor product that works to stop bleeding
consistently. Bleeds can take days, even weeks to stop. Hospitalizations are
frequent and family life is turned upside. Attending a weeklong hemophilia
summer camp often becomes a wish. When attendance is possible, there is a high
probability that there won’t be anyone else there with an inhibitor. Participating
in many of the activities that other blood brothers can do with prophylaxis is impossible.
As one camper with an inhibitor states, “How I envied them and wished I could
do what they could do.”
Jane Cavanaugh
Smith and Janet Brewer conceived the idea for Inhibitor Family Camp. As long
standing members of the hemophilia community and mothers of sons with an
inhibitor, they endeavored to bring families affected by an inhibitor together
in an activity filled, intimate environment and where better than camp? The
very nature of a camp setting provides opportunities to try things for the
first time, stretch ones limits and create peer relationships.
In 2010,
Comprehensive Health Education Services (CHES) sponsored the very first
Inhibitor Family Camp at Victory Junction in North Carolina. For the first
time, children with an inhibitor and their families had a camp to call their
own. Supported by an educational grant from Novo Nordisk, its goal then and
still is to bring together families who continue to struggle with the challenge
of an active inhibitor. Families of a child whose inhibitor has tolerized are
welcome if space allows. With camp now in its third year, CHES has partnered
with Serious Fun camps (founded by Paul Newman), The Painted Turtle in
California and Victory Junction in North Carolina to bring two Inhibitor Family
Camp programs to the inhibitor community. In response to participant requests,
this year’s camp program will offer three nights of education, activities and
Inhibitor Family
Camp is limited to 25 families per camp and slots fill up quickly. The Painted
Turtle session will be held Friday April 19 to Monday April 22, 2013 in Lake
Hughes, California. Registration opens on
January 4, 2013
. The Victory Junction session will be held Thursday October
17-Sunday October 20, 2013 in Randleman, NC. Registration will open on July 1, 2013. Each of these programs
are offered totally free of charge to eligible families.
response to what Inhibitor Family Camp means to them include:
“I loved all the
activities. Lots of things to do. The boys had a wonderful time. I have no
complaints except we didn’t want to leave! Thank you!”
“Hanging with the other
kids and connecting with them through similar experiences.”
“This program has been fully instrumental
to my family in helping us deal with hemophilia and inhibitors.”
For additional information,
please call Comprehensive Health Education Services at 781-878-8561. 
Click below to view Comprehensive Health Education
Inhibitor Family Camp Brochure http://attachment.benchmarkemail.com/c51644/2013_Inhibitor_Family_Camp.pdf  

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