Pfizer Releases Exciting New Features for HemMobile App

I always say that with a background in statistics and economics, I love collecting data. I have a spread sheet of all my workouts going back years, tracking how many miles run, weights lifted and more. I keep a spreadsheet of all the books I’ve read for the past 10 years! And I don’t even need to do this stuff. 
One thing you should do if you have hemophilia is track your bleeds. Check out Pfizer’s app for tracking all things hemophilia.—Laurie
Hemophilia can be difficult, but
tracking it doesn’t need to be. Thanks to the Pfizer Hemophilia Team, HemMobile
now provides activity tracking and is integrated with the new HealthTM
app for iOS 8 and Google Fit™ for AndroidTM. This will allow you to seamlessly
transfer data from wearable devices and other fitness apps right into
HemMobile. With the ability to track activity along with your infusions, you
can have access to important information you need to have more informed
discussions with your physician. This is particularly important for the
hemophilia community, because maintaining an active lifestyle can help to
strengthen joints and protect against bleeds.
The updates to the app are a result of
partnering closely with not only expert developers and physicians, but also
members of the community who use the HemMobile app every day.
With the latest version of HemMobile you can:
Log activities, infusions
and bleeds
Share single consolidated
reports with your treatment team
Set reminders for resupply,
appointments and much more
Find nearby hemophilia
treatment centers and National Hemophilia Foundation chapters
Personalize your profile
Learn more about Pfizer’s commitment to
innovate and tailor technology to meet the needs of patients within the
hemophilia community by visiting The app is available for download in Apple’s App Store and
through Google Play.
Also connect with others in the Hemophilia
community and stay up-to-date on hemophilia resources, support and news over on
Facebook at
iPhone is a
trademark of Apple Inc., registered in the U.S. and other countries. Health is a registered trademark and App Store is a
service mark of Apple Inc. Google Fit is a registered trademark, and Android
and Google Play are trademarks of Google Inc.
The content of this post is provided
and sponsored by Pfizer.
Interesting Book I Just Read

The Stranger Beside Me [Kindle]
Ann Rule
The original story about serial killer Ted Bundy, who was executed in 1989 after killing many young women. Author Ann Rule just recently died, and when I read about her death, recalled I had read this book decades ago and wanted to revisit it. My writing has matured a bit because what I thought was an excellent book is actually pretty mediocre. Rule’s claim to fame is that she worked next to Bundy at a crisis hotline center, and became friends with him through the years. Oddly, as a crime writer, she was commissioned to do a book about the serial killings of the young men of Washington and Utah, never believing it was Bundy, even when all evidence seemed to point to him.  As a journalist, Rule is very dry and factual (this is no In Cold Blood), and yet, she interjects her own feelings about Bundy constantly, almost bizarrely. She was “frightened” when in prison he threatened to commit suicide. Rule writes much too much about Bundy’s love triangles, and not about the investigations. There’s a level of depth missing here; we never learn or approach why Bundy behaved as he did. We get a good chronology, but little insight. It’s a decent read: chilling, captivating, but at times too dry and lacking, with too much of the author’s feelings and personal life interjecting and interrupting. The update in the front is very choppy and detracts from the book—should have been placed in the back. You may note that the movie Silence of the Lambs’ antagonist used Bundy’s trick of luring women. Two/five stars.

Financial Support Programs Offered By Pfizer

There are a lot of great programs available to people in our bleeding disorder community. I’ve been sharing some of them recently. Here’s another great one from Pfizer!
Managing hemophilia is complex. Patients and caregivers face
medical, emotional, social and financial challenges. Understanding therapy is
just one part of the equation, Pfizer strives to provide support beyond science
and innovation. The company offers many educational resources and financial
assistance programs for eligible patients who infuse with Pfizer Hemophilia
Recombinant Factor products. 
Factor Savings Card Program provides financial
support to eligible patients to help cover out-of- pocket co-pay, deductible,
and coinsurance associated with their Pfizer factor costs. Eligible patients
can save up to $5,000 annually. The Card is not health insurance and will only
be accepted at participating pharmacies.
RxPathways is a comprehensive assistance program
that provides eligible patients with a range of support services, including
insurance counseling, co-pay assistance and access to medicines for free or at
a savings.
Pfizer Trial Prescription Program allows
eligible patients new to Pfizer factor products to receive a one-time supply up
to 20,000 IU at no cost.
To learn more about these programs, visit the financial
support page on Hemophilia
. On this site you’ll also find tips and resources to help you and
your family navigate the various challenges that can arise at different life
stages. Another great way to stay up-to-date on the support provided by Pfizer,
and to hear from others in the community, is to join the conversation on the Our Hemophilia Community Facebook page. 
This content was provided and sponsored by Pfizer.

Great Book I Just Read
Mustaine: A Heavy Metal Memoir [Kindle]
Dave Mustaine and Joe Kayden

Sometimes called the founder of thrash metal, Mustaine shares his troubled and abusive childhood, his calling to music in the 80s, his short foray as a founder of Metallica, his sudden ouster, and his inspiration to form Megadeth, one of the top thrash and heavy metal bands of all time. Mustaine was driven to create, recreate, fight others and destroy himself with drugs. That he is alive is a miracle. Burning through 17 different band members in a four piece band, Mustaine is not easy to deal with. Here he is candid, acknowledging his eternal grudge against Metallica and his own abrasive personality. Meeting his wife turned his life around, though not enough to stay off drugs. Finally, in a surprise ending, he finds peace and sobriety. I only wish the book could have delved as much into his creative process (how did he write such amazong songs?!) as it did into his drug usage and rehab.
Four/five stars.

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
·       Five $4,000 graduate scholarships
·       Ten $2,500 college scholarships, including vocational
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

This is a paid announcement by Pfizer.

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
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
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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