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Young Adults and Insurance

admin March 28, 2021

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Inspiring Stories from Students with Hemophilia

Laurie Kelley December 9, 2013

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

Laurie Kelley December 1, 2013
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.

Scholarship in Honor of a Great Lady: Soozie Courter

Laurie Kelley January 22, 2013
Last week I blogged about a great scholarship from Baxter. This week I want to share another from Pfizer.
Pfizer Hemophilia is excited to announce the launch of the new application period for the Soozie Courter Hemophilia Scholarship program.   I knew Soozie from long ago, when 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 coordinents 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!

Product and Program Updates

Laurie Kelley March 12, 2012

Even while we wait for new products to come in the hemophilia pipeline, there are improvements being made all the time with our current products. Here are two changes you might need to know about.

From Bayer: Bayer’s Factor Solutions patient support now includes a Helpline to give hemophilia A patients and caregivers a personalized point of contact for getting information on insurance, patient assistance and government assistance programs. This is for Kogenate FS users, and offers: coverage, coding, reimbursement and claim issues, verifying patient insurance benefits, understanding healthcare reform insurance changes, assessing new insurance and alternate funding sources, understanding Explanation of Benefits (EOB) statements, and determining eligibility for assistance programs.

Factor Solutions case specialists, including Spanish-speaking specialists, are specially trained and understand the unique needs of the hemophilia A community. Contact them at 1-800-288-8374 for more information.

From Pfizer: There is now a 3000 IU dose of BeneFIX available for hemophilia B patients. Pfizer Hemophilia is the first to offer this new dosage strength for hemophilia B patients. Higher doses may reduce the number of vials needed per infusion, save space at a patient’s home or on the go and, may have less waste for disposal. Learn more at www.benefix.com.

I’ll try to provide other product changes and improvements as they come in!

Great Book I Just Read
Kidnapped by Robert Louis Stevenson (Kindle version)

This is one of my favorite books from childhood. What a joy to read this historical fiction classic again, and on my Kindle! It’s 1752, Scotland, and following his father’s death, young David Balfour heads out with a letter of introduction to meet his uncle Ebenezer at the House of Shaw, which he imagines to be a great estate. Hoping for wealth and a new beginning, he instead meets a miserly old man and crumbling mansion. David soon learns that there are many secrets at Shaws, and when he tries to find out the true owner of the estate, his uncle tricks him into town, and then lures him onto a ship, where he is kidnapped to be an indentured servant in America. Rounding the north of Scotland one night, the ship crashes into another: the crew picks up a mysterious man in French dress with a thick money belt, real-life historical figure Alan Breck Stewart, a Jacobite. David overhears the captain plotting to kill Alan, and tells Alan. Together David and Alan fight off the crew of the ship, which then crashes and sinks. David survives, and wanders for days alone in the Highlands, before finding help and eventually is reunited with Alan. When they are both framed for the real-life death of Colin Roy Campbell, they flee into the Highlands and endure great suffering and starvation as they try to reach Edinburgh, for Alan wants to help David get his inheritance back, and David wants to help Alan return safely to France. The book is crackling with adventure, with great dialogue and unforgettable characters. The story will tell you about the politics and history of Scotland in the 1700s. Interesting to read, due to the Scottish dialect and strange words–making the Kindle or iPad invaluable as you can easily click on each word’s meaning. The 1960 Disney movie is faithful to the book, staring Peter Finch as Alan Breck, and wonderfully done. Five/five stars.

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