November 2011

Virtual Walk for Hemophilia Raises Awareness

While I was preparing to climb Kilimanjaro in August, other people were raising funds for hemophilia in a different fashion—“virtually” walking!

Bayer HealthCare this past year supported a Virtual Walk for Hemophilia, an innovative interactive contest that raises awareness and funds for those living with a bleeding disorder. Its purpose is to raise money for NHF and chapters, get the community involved, and raise awareness about bleeding disorders. By November 6, 15,637 people – those with and without hemophilia – had signed up. Pretty impressive when you consider that the number of people with hemophilia in the US is estimated to be about 15,000-20,000!

Bayer had a special ceremony at NHF’s annual meeting in Chicago, where members of the hemophilia community commemorated the successful conclusion of the first walk. How did they do? Bayer provided $30,000 in sponsorship funds to the national office of the NHF plus an additional $30,000 in sponsorship funds to the three chapters with the greatest number of walkers, for a total of $60,000!

The chapters receiving sponsorship funds are:
First place: Arizona Hemophilia Foundation, 5,004 walkers, received $15,000.
Second place: Bleeding Disorders Alliance Illinois, 3,716 walkers, received $10,000.
Third place: Hemophilia of Indiana, 2,510 walkers, received $5,000.

“We checked the website every day to see our standing, and it really pushed our members to reach out to others directly and through social media outlets like Facebook and Twitter,” said Bob Robinson, Executive Director, Bleeding Disorders Alliance Illinois. “Most importantly, the sponsorship funds we’re receiving will go to educational and support programs for people with bleeding disorders, including summer camp for children with hemophilia, which can have a lasting impression on their lives.”

As the first walk was so successful, Bayer also kicked off year two of the Virtual Walk as a means of continued support for hemophilia communities across the U.S. and globally—and Save One Life, the nonprofit I founded! In 2012 up to $7,000 in sponsorship funds will go to Save One Life an international organization that offers people and organizations the opportunity to sponsor a child or adult with a bleeding disorder in a developing country.

(Photo: Paul Bedard, VP Bayer Healthcare, presenting check to Bob Robinson and the Bleeding Disorders Alliance Illinois)

Great Book I Just Read
Unbroken: A World War II Story of Survival, Resilience, and Redemption by Lauren Hillenbrand

This is one of the best books you will read this year. The true story of Louis Zamperini, juvenile delinquent, hyper energetic with a penchant for trouble, who is steered into track by his loving older brother and becomes a running star. By age 19 he is plucked from Torrance, California and sent to the 1936 Olympics in Munich, Germany to represent his country. He just misses winning a medal, but catches the eye of Hitler, who asks to meet him.

When he returns home Louis is drafted to serve in World War II, and becomes a bombardier on a B-24. After many victories, his plane is forced down in the Pacific, and the story takes amazing turns—you will see where Louie’s drive, discipline and energy helps to save his life and those of his mates. He survives the crash, and then survives an unbelievable 47 days at sea, fighting off sharks, dehydration and starvation. When he hits land, it’s at a Japanese prison camp in the Marshall Islands. His troubles, incredibly, are just beginning.

Louis eventually is sent to the worst of all places, first Omori and then Naoetsu, the first under the sadistic control of commandant Mutsuhiro Watanabe (the “Bird”), who takes pleasure from inflicting slow, pathological and grinding psychological and physical torture on the inmates. When the Bird learns who Louie is, the “Torrance Tornado,” he ferrets him out daily and unleashes brutal, slow, unending torment, including beatings until he is unconscious and 14-hour days hard labor on a 500-calorie a day diet. “Unbroken” refers to Louie’s tenacious mental spirit, which would not relent, submit or be defeated, despite years of torture.

Hillenbrand deftly describes the bombardment of Japan by Allied troops, until the Hiroshima and Nagasaki bombings ended the war. Louie eventually came home, healed physically but not mentally. Post-traumatic stress disorder was not even identified then, and Louie suffered terribly, and caused those around him to suffer. It was heartbreaking to know that this man survived so much, and retained his dignity, now only to lose it slowly through the psychological scars of war and torture. The most memorable part of the book has to be the end, where he finds salvation, in a most amazing, uplifting and permanent way. He is truly liberated then and only then, and healed, and becomes an instrument of inspiration in sharing his story with the world. Louis is still alive, at age 94, and still going strong, still unbroken.

Hillenbrand, author of Seabiscuit, is a technically solid writer, but shines as a master storyteller. Not much flowery prose, but this book is a gripping page-turner. I read it while cooking, walking down a flight of stairs, ironing, on my treadmill. I couldn’t put it down; it is inspirational and a testament to human spirit and resilience. I could not help but feel proud of our troops and our country, back when a war had clear-cut good guys and bad guys. Five stars.

Hemophilia in Puritan New England

It’s Thanksgiving time! And living in New England, where it all happened, I can’t help but be drawn to our deep and fascinating history. This is where the Puritans landed, where Englishman and native American lived together, where brotherhood sometimes reigned but where wars and viruses also decimated some of the tribes of Massachusetts.

It’s also the location of the original American with hemophilia (if you don’t count whichever native American may have had it first; with no records we will never know). America’s first family with hemophilia was the Appletons. I’ve written about them before here, and we printed a great article about them in PEN, back in 2002. They should never be forgotten, just as our forefathers should not be forgotten.

Arriving in New England on a sailing ship on a chilly fall day in 1639 was John Oliver (1613–1642) of Bristol, England, who had hemophilia. Like many English, he was fleeing the increasingly repressive English environment for Protestants. Indeed, between 1629 when King Charles I dissolved the Puritan-friendly Parliament, and 1640 when the English Civil War began (eventually Puritans under Oliver Cromwell behead Charles and take over), more than 20,000 English left to settle in New England, and in particular, the Massachusetts Bay colony.

John lived for only three years after arriving, fathering one child, Mary, and dying young as a consequence of his hemophilia. Not until after 1800 did the medical community begin using the term hemophilia to describe his disorder. John’s daughter, Mary Oliver (1640–1698), was likely the first hemophilia carrier of European descent born in the colonies. With her husband, Major Samuel Appleton, Jr. (1625–1696), Mary had three daughters and five sons. One of these sons, Oliver Appleton (1677–1759), was the first American colonist born with hemophilia! And they lived about 20 minutes from where I live now, and to this day, you can go to Ipswich and see the historic Appleton farms.

To read more about this story, and life with hemophilia in colonial America, November 2002 Issue Parent Empowerment Newsletter “The Appletons: America’s “First Family” With Hemophilia,” by Richard J. Atwood and Sara P. Evangelos. © 2002 LA Kelley Communications, Inc. It’s also reprinted in an earlier Blog:

Interesting Book I Just Read

The Wordy Shipmates by Sarah Vowell

This is a great Thanksgiving read, and I chose this book knowing it was a young writer’s hip take on the founding of Boston (history near and dear to me). Not about the 1620 Pilgrims but about John Winthrop and his Puritans who arrive on the Arbella in 1630, the Massachusetts Bay colonists. The book is worth reading for the interesting take on history: you’ll learn about the religious motives that drove the Puritans, how they differed than the Pilgrims, who were Separatists, life in old Boston, the Pequot War and massacre, Anne Hutchinson, and the complex relationship between Winthrop (Massachusetts’ first governor) and Roger William (Rhode Island’s founder). All this is done with a snappy, sometimes sarcastic, crisp and witty style they should appeal to young people especially. There are no chapters in the 248 page book, making it a long read, at times a bit tedious on the eyes. I like her style when she is sticking strictly to the history, and she has mostly done her homework.

Sadly, the book has three big problems. First, she veers off into numerous tangents or gets stuck on a subject too long. Somehow Vowell will be speaking about a memorial to the indomitable Anne Hutchinson, and suddenly get on a rant about how business reply cards offer men one check box for their title (“Mrs.”) but women get three (“Mrs., Miss, Ms.”) which obviously is a judgment against women for their lifestyles—give it a rest, Sarah!

Sometimes the religious focus goes on and on, and I wondered where the book was going when suddenly, boom—we get back on track and resume the fascinating story of “olde” Boston again.

Second, her sarcasm, which works well in small doses when spicing up the history, works against her when she attempts, quite inadequately, to parallel events in the 1600s as direct forerunners to modern day politics and world events. Vowell just does not have the academic chops to make these comparisons, and the result comes across as a poorly researched analysis, bolstered mostly by sound bites and shrieking liberalism–and I am a liberal, and found it embarrassing. I felt I was reading a biased essay by a freshman in a college writing class. It was juvenile and took her away from the deep waters of the moment-to-moment events of Boston that I was enjoying, into shallow waters of her political point-of-view, where she lacks depth. She drew very poor conclusions based on hasty and questionable extrapolations.

Third, there’s just too much personal interjection in the book. It detracts from the mostly delightful text; it reflects poorly on Vowell, because she reveals her own skewed biases against any religion, and against modern day conservatives. She is an armchair atheist, proudly proclaiming that she prefers her desk and comfy room, rather than front-line experience. She reveals at somewhat awkward times in the book her own strange childhood experiences with religion. The book becomes more a revealing look at a young author who has some psychological axes to grind. It really does detract from the story.

I recommend the book, nonetheless. If you are a writer or debater this would be a great book to chew on. Vowell should be challenged on her many assumptions, particular when she tries to tie a motto on the Mass Bay Colony logo to American imperialism in WW II, Vietnam, Korea and Iraq, all in one sentence. I think Vowell has talent, but has issues to overcome. If she can get herself out of the way, I think she’d be an outstanding writer. I love the idea of making history entertaining—and by entertaining I mean exciting to read, fun to read, or even thought provoking. Vowell is not there yet, but could be someday. Read it for the history, and be sure to challenge her assumptions, connections to present-day, and opinions. Have fun with it! Boston has a fascinating history and I am glad she wrote about it. Three out of five stars.

NHF’s 63rd Annual Meeting in Chicago!

The NHF 63rd Annual Meeting drew about 2,800 congregated from as far away as Guam and Israel to join Americans with hemophilia and the companies and medical staff who care for us. You can meet patients of all types, drug reps, homecare companies, and the nation’s top hematologists, nurses, social workers and other medical staff. You might even meet a celebrity ballplayer!

I’ve been attending since 1991, 20 years! It is pure joy to run into my friends and colleagues, see their children all grown up and healthy, and to meet new families. Often I am asked to give presentations, but this time, except for a Friday night presentation to a group of social workers and nurses, I was off the hook. There to network, socialize and learn.

For three days there are symposium and lectures, and plenty of opportunities to meet company reps to ask questions. CJ Wilson, former pitcher for the Texas Rangers, who was in the World Series, was on hand to meet children and sign baseballs. I was able to say hi to him, and he smiled when he remembered that I had put him in touch with the South African Hemophilia Foundation last year, when he asked to meet kids with hemophilia there while on vacation! You have to love a star athlete who does that.

I attended the Baxter Symposium Saturday morning, all about staying fit. Barry Haarde spoke about having hemophilia, HIV and Hep C, but being able to lead an active life. That’s an understatement: the man is fit as can be, lean and bikes hundreds of miles a week. He is a serious inspiration to me. Last week I read his Facebook note about how much he biked, and I literally got right on mine and cycled 18 miles. Also, Tres and Morgan Major spoke about raising three boys with hemophilia, and how they all stay fit by doing Tae Kwon Do and other activities. They are a family to admire: solid values, a plan, and togetherness expressed in physical activities and faith sharing.

One of the more interesting things I saw was “Cubixx,” a revolutionary way to record factor usage that may be offered next year–a dorm size refrigerator that requires you to log in bleed information before you can access your factor.

And one of the most beautiful things I saw at the event was the Remembrance Quilt, which was put in a quiet place, hung so you could almost be enveloped in its silence, sewn by all those who lost loved ones to AIDS.

The final night activity was hosted by Biogen Idec Hemophilia and featured “Blues Brothers” DJs, with plenty of food. I think hundreds showed for this great time.

Next year’s meeting is in Orlando, and I hope even more families can come for connection and learning. Thanks to NHF for another excellent event, for all their hard work, and thanks to all the companies that sponsored this amazing conference!

Off to NHF in Chicago

This week is National Hemophilia Foundation’s 63 Annual meeting, so I am off to Chicago Tuesday to meet with many old friends and colleagues. These include patients (some of whom I’ve known since infancy and who are now in college!), parents, home care reps, pharmaceutical reps, hemophilia organization leaders, and more. It’s always a great event!

NHF expects probably 2,000-3,000 people to attend.

I hope to post during the week about what we hear and see.

One thing on everyone’s mind is reimbursement. With the new Affordable Care Act, so much has changed and is changing. We need to learn all we can at meetings like this to prepare for unexpected costs, and changes in health care delivery. One thing is certain: the hemophilia industry as we know it is permanently changing. And change may come faster than we think.

To start learning about current changes in reimbursement, start reading!

A great place to start? CSL Behring’s latest Key Issues Dialogue focuses on diminished access to care for people with rare diseases via interviews with our nation’s top specialists and advocates for people with chronic disorders.

Book I Just Read
Managing the Nonprofit
Peter Drucker

Drucker is considered a business guru, though this book, published in 1990, is a bit outdated. It’s a quick read, and loaded with nutritious food for thought. Drucker defines how nonprofits are different than for-profits, and was one of the early oracles to say that nonprofits need to think and operate like businesses. And leadership is key! He gives great synopsis of what effective leadership is. One I love and still use: “The most important way to develop someone is to use them as teachers.” And I live by: “Don’t guess, go ask.” Too many business people fail when they assume. This book is short, can be read in one sitting, but gives you hours of materials to think on. Three stars.

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