December 9, 2013

Inspiring Stories from Students with Hemophilia

I just returned from India, there to check on our scholarship winners from Save One Life, my nonprofit. I was impressed to see such brave young men with hemophilia, most of whom do not often get treatment, attending college and trying to forge a future. They are succeeding. There’s so much joy in watching a young person fulfill their educational dreams!
It’s the same in the US, where so many with hemophilia are attempting to fulfill their dreams as well. Last week, I recognized
the
17 winners of the Soozie Courter Hemophilia
Scholarship, a Pfizer- sponsored tuition assistance
program. This week I am pleased to spotlight the stories of three recipients who are working
hard to achieve
their dreams while living with hemophilia.
Evan Poole never let hemophilia B
get in the way of his schoolwork or athletic pursuits. Evan’s condition forced him to challenge himself. When a
bad
bleed meant
missing school,
he always made sure to stay on top of his assignments. And he found athletic passions, such as golf, that he was able to pursue.
His perseverance has paid off.
Following in his father’s footsteps, Evan
is
a freshman studying engineering at Trine University. He was also
recently selected to take part in the National Hemophilia Foundation’s National
Youth Leadership
Institute (NYLI), based, in part, on
his significant involvement in the
hemophilia community. While Evan
initially had
some anxieties
about starting
school, including managing his condition
without his parents, he is now excited and up for the challenge!
Travis Albright, a University of Michigan senior
with
hemophilia A, first became
involved in the hemophilia
community when
he was 10 years old and attended Camp Bold Eagle in
Muskegon, Michigan, run
by
the Hemophilia Foundation
of
Michigan (HFM). His commitment to the community steadily evolved year after year as he too
became involved with the NYLI, as well
as the HFM’s MYLIFE youth
leadership group. Through his leadership work, Travis quickly became a mentor to youth with
hemophilia and
encouraged
peers to educate themselves about ways to
successfully live with hemophilia.
Through
his
experiences, Travis became an advocate for
people living with
hemophilia.
Following his passion to educate
policymakers about hemophilia
and advocate for access to
treatment, Travis landed an
internship in Washington, D.C., where
he
assisted Rep. Gary
Peters and was invited to
speak at NHF’s annual
Washington Days event. He is now working
to complete a major in public policy.
Michael
O’Connor
, a graduate
student with hemophilia
B,
says he thinks of his life with
hemophilia
in two phases: before and
after he
started swimming. Swimming became both a passion and
a way to help
him
get in tune with
his
body and better manage his condition. He
swam competitively for many years and also started coaching. Michael was approached by a mother who
had seen him speak about the importance
of
staying active
and asked
if he would
give lessons to her 10 year old
son
with hemophilia. He jumped at the opportunity, and was able to
combat the uncertainty of living with
a bleeding disorder by being
a role model for others.
Michael believes that if you
are
smart about yourself and your body, you
work hard, and you do what you love, it’s going to
work out in the end. 
I second that from Michael. His mother, back in 1999, actually gave me the idea to start Save One Life, which now provides sponsorships to over 1,000 children with hemophilia in developing countries, and gives scholarships to many young men struggling to make it. It was hard work, but we love it, and we are reaping the rewards in watching young people live and thrive through their education. 
And things are
working out for Michael. He is back in the water – but in
a different way. He
is currently pursuing
a Master’s degree
in
geosciences at The University of Texas at Austin
and taking part in a research project
that often brings him to Louisiana. His work focuses on quantifying the role of coastal delta islands in filtering
out
nitrogen in the
Mississippi River before
it
reaches the Gulf of Mexico
and causes ecological
damage.
While these students have
taken different directions in
their studies and extracurricular pursuits,
they are all shining examples of overcoming challenges to achieve
a goal.
We wish them much success in the future and thank them for sharing their stories. Visit
Hemophilia Village and the
site’s Facebook page for more information on the
Soozie Courter Hemophilia
Scholarship program and to see video clips about these recipients.
Great Book I Just Read
South African Dispatches by Donald Woods
Donald Woods rocketed to fame when his young daughter was burned from an acid-laced t-shirt sent by the South African police in the 1970s, where Woods was an outspoken white editor and critic of the brutal apartheid policy of the South African government that treated black people like subhumans. This collection of his best publications, short 500-800 word articles, makes him a South African Mark Twain. Scathing wit, brilliant commentary in the fewest possible words, brimming with carefully-veiled loathing, and as the articles build on over time, direct attacks to the government jugular. The wit and clever turn of phrases disappears when his friend, Steve Biko, the leader of the black nationalist movement, is killed while in police custody. This little gem of a book is incredible; my best literary find of the year. Watch “Cry Freedom,” starring Denzel Washington as Biko, and Kevin Kline as Woods; great movie that captures the dark and brutal Afrikaners regime, and black struggle for self-rule. Five/five stars.
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