Pfizer’s Soozie Courter Scholarship Program Turns 18!

I am honored to say I knew Soozie Courter: she was a “neighbor,” just living in the next town, and we one time shared a ride to the airport. A lovely, committed and intelligent woman, taken too soon. Below is a special annoucement by Pfizer, to benefit the community in the name of this wonderful woman. — Laurie

Pfizer Hemophilia is excited to
announce the 18th year of the Soozie Courter Scholarship program.
Named to honor a valued and respected friend of the hemophilia community, the
Soozie Courter scholarship is a tuition assistance program sponsored by Pfizer that
aims to help students advance their academic goals.
Scholarships are awarded to applicants
who present the best combination of a creative and persuasive essay, excellent
recommendations and superior academic standing. For the 2015-2016 academic year, Pfizer will
award:
·       Five $4,000 graduate scholarships
·       Ten $2,500 college scholarships, including vocational
schools
William
Bowles, 2014 Soozie Courter scholarship winner, is using the scholarship funds
he was awarded to help him obtain a Master of Public Affairs degree at Columbia
University in NYC and plans to eventually pursue a PhD in Business Policy. He
ultimately hopes to work with local state governments on policies to help
improve business development in the rural south. According to William, “coping with a genetic
disorder does not mean sacrificing commitments, dreams, or career aspirations.”
To be eligible for the scholarship,
students must have either hemophilia A or hemophilia B and be a high school
senior, have a high school diploma or general education development (GED)
credential, or be currently enrolled in an accredited junior college, college
(as an undergraduate or graduate student), or vocational school. All completed
applications must be postmarked or sent via e-mail no later than
May 20, 2015. To download an application, please visit here. To learn about the
inspiring stories of past winners, check out the Pfizer Facebook Page, Our Hemophilia Community.

The 18th
anniversary of the Soozie Courter scholarship illustrates the long standing
pledge by Pfizer to help patients with hemophilia further their education. To
learn more about other ways Pfizer is supporting the hemophilia community,
visit Hemophilia Village. From diagnosis to
dating, the newly refreshed site provides tips, resources, and words of wisdom
to help you navigate through the various challenges that arise throughout the
years.

This is a paid announcement by Pfizer.

News from Pharma

So much has been happening in the hemophilia community lately, I decided to post some news releases about new products and new services from three different pharma manufacturers. Last week we shared the news about Biogen Idec’s Eolctate approval; below are more interesting items, straight from the horses’ mouths.

From CSL Behring
New–CSL Behring’s world-class biotechnology manufacturing facility in Broadmeadows, Australia. The facility is for late-stage production of hemophilia therapies and is one of the largest and most advanced of its kind in the world. Leading-edge science is at the core of the $250 million expansion, which is expected to drive long-term growth in CSL Behring’s promising bleeding disorders portfolio.
In particular, the facility will produce novel recombinant therapies on a large scale for international clinical trials. Our recombinant technology uses a unique recombinant-albumin-fusion platform, which we believe could offer distinct clinical advantages and improve patient experiences.  Suffice it say, CSL Behring’s steadily-rising research and development spending has played a key role in developing these and other new technologies. For example, in 2011/2012 we spent $368 million on R&D (about 8% of total sales). And over the last 5 to 10 years, we have advanced an enviable pipeline with exciting product candidates that may offer enormous treatment benefits. 



From Baxter Healthcare

Mobile video gamers looking for the next app for their smartphone or tablet now have an option developed specifically for the hemophilia community. Baxter Healthcare Corporation has created a free multi-game app, called Eco-Trek, primarily for people between the ages of 15 and 32. Yet based on the reactions of pre-release product testers, Baxter expects that Eco-Trek will appeal to people of all ages, from adolescents waiting to be seen at hemophilia treatment centers, to older adults that enjoy competing in video games. Eco-Trek, which is available to everyone regardless of their treatment, is the first socially connected video game designed for the hemophilia community. With hemophilia-specific content and Facebook score-sharing built into the game, Eco-Trek is a first-of-its-kind mobile app. A national leaderboard will create competition among players in Eco-Trek’s three online adventures, each of which have 10 levels:
·     Bushwhacked! – Find your way through a forest maze without losing supplies from your backpack
·     Alpine Summit – Compete in an uphill race against the clock, dodging obstacles along the trail
·     Roughin’ It – Set up camp and complete specific tasks while pesky critters try to get in your way

“We are really excited about Eco-Trek because it’s simple, interactive, and offers important educational information about hemophilia A and ADVATE [Antihemophilic Factor (Recombinant)], while you’re competing in fun activities,” said Jeff Schaffnit, senior director of US Hemophilia Marketing. “For teens and young adults with hemophilia, this type of format can make it a lot more fun to gain knowledge on hemophilia.”

Eco-Trek is a free app available for download from the Apple App Store and Google Play. For more information, contact your Baxter representative.

From Pfizer

Pfizer understands that health care costs can be a challenge for those with hemophilia and their families, and strives to provide access and patient-centered support. Therapy is just one part of the equation, which is why we offer financial support for eligible patients as well as educational programs for patients with hemophilia who infuse with Pfizer Hemophilia Recombinant Factor products.

We’re pleased to share with you three program updates and hope that you will help us share this news with the hemophilia community. As of April 1:

•    Pfizer increased the maximum cap on its Pfizer Factor Savings Card
Program. Eligible patients can now save up to $5,000 annually on copay, deductible and coinsurance costs. Terms and conditions apply. Visit PfizerFactorSavingsCard.com to learn more and fill out a brief registration form. If you have any questions about the use of this Pfizer Factor Savings Card, please call 1-888-240-9040 or send questions to: Pfizer Factor Savings Program, 6501 Weston Parkway, Suite 370, Cary, NC 27513.

•    To continue to meet the changing needs of today’s patients, Pfizer is consolidating its various prescription assistance programs, formerly known as Pfizer Helpful Answers, into a new comprehensive program called Pfizer RxPathways. Pfizer RxPathways is a family of prescription assistance programs that provides eligible patients with financial support and reimbursement support services. Access the program today by visiting PfizerRxPath.com.

•    The Soozie Courter Hemophilia Scholarship Program, a tuition assistance program
for students with either hemophilia A or hemophilia B, is now accepting applications for the 2014-2015 school year. To apply, please visit http://www.hemophiliavillage.com/resources-support/scholarship-assistance 

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.

Recognizing the “Class of 2013” – The Soozie Courter Hemophilia Scholarship Winners

With the school
year now in full
swing, I’d like to recognize the “Class of 2013” winners of the Soozie Courter Hemophilia
Scholarship –
a group of students with hemophilia who are
dedicated
to
their education and to making
a difference in our community.
Earlier this year, I wrote about this Pfizer-sponsored tuition US assistance program, which
happens to be named after a woman
that I had the pleasure of knowing years ago.
Soozie Courter, who lived in the town next to me and who would share rides with me sometimes, worked in the hemophilia division at Genetics Institute (now at Pfizer) would
be proud of this year’s winners and the continued
emphasis placed on
supporting academic excellence
among
the hemophilia
community.
We are fortunate that there are
numerous scholarships available
to current and future US college students with bleeding disorders. Costs like tuition, books and supplies, room and board, health
insurance and transportation
can add up quickly and
the Soozie
Courter Hemophilia Scholarship program aims to help
address these challenges. Scholarships are
awarded
to applicants who present the best combination of a creative and
persuasive
essay, excellent recommendations and superior academic standing.
For the
2013-2014 academic year, Pfizer awarded
$50,000 in scholarships to 17 US graduate and undergraduate
students with hemophilia. Through
their involvement in local hemophilia chapters
and mentorships, and their commitment to future plans, these students personify what it means
to overcome
challenges to
make a difference
in
their communities.
I’d
like to congratulate all
the scholarship recipients—many of whom I have known since they were kids— and wish them much
luck in the coming
school year and
beyond!

Travis Albright                   Eric Frey 
Michael Bennett                 Alexander Kattenbaugh
Michael Bishop                  Shawn Whelan
William Bowles                 Lynden Prior
Andrew-Paul Deeb            Evan Poole
Jorge de la Riva                 Michael O’Connor
Calvin
Dutcher                  Hunter Montgomery 
Clayton Lynn                    Adam Mier
BoDean Messier 

Visit Hemophilia Village for more information on the
Soozie Courter Hemophilia
Scholarship program,
and check back here next week to learn more
about three
of
this year’s winners!
Great Book I Just Read
Desperate Passage: The Donner Party’s Perilous Journey West by Ethan Rarick [Kindle]
The Donner Party indelibly stained American history for their horrific survival stories of cannibalism in the Sierra Nevada in 1846, trapped when the short-cut and untried passage they attempted filled with 13 feet of snow. Almost all schoolchildren read about this, but what was the real story? In this well-researched and written book, Rarick reveals the dreams, desperation and daring of the 81 people who set out for California in hopes of a better life. In that group were newborns and toddlers, teens and old men. 45 survived a situation that was incomprehensible; what is amazing is that any survived. Rarick delves deeply into the writings left behind, the personalities, the situational leaders and heroes and scoundrels. Human souls in their most desperate hours, some emerged stronger; some simply gave up. All needed one another. How the children suffered… It is a profound story and a testament to American willpower and daring. A great read. Five/five stars.
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