May 2011

Memorial Day of a Different Sort

Today is Memorial Day in the US, where we remember and honor those brave soldiers who fought in wars to protect our country and liberate others. It would be hard to find a family who does not have someone in it who gave their life for their country. I have at least one in my family: my uncle Jim Morrow, my father’s brother, who died in 1967 in Viet Nam. We find ways to remember our brave heroes: Jim has a place of honor on the Vietnam Wall in Washington DC, and on the virtual Wall, on line.

This week we will also remember heroes from a different war: HIV.

On June 2, PBS will at last broadcast Bad Blood: A Cautionary Tale, by Marilyn Ness. This emotional, deeply moving documentary portrays life with hemophilia before the “war,” when there was no blood clotting factor. This in itself can bring you to tears, watching children hobble about on crutches, suffering with joint bleeds, in hospital beds when they should be out in the sunshine playing. Then, the miracle of factor, and how it transformed lives from being crippled to being freed. Factor liberated all the children from this sad fate.

Who could have ever, in their wildest dreams, known that in the late 1970s a virus, unlike anything the world had ever seen, lurked in the nation’s blood supply? This is the stuff of science fiction, not reality. But it became our reality. Thousands were infected, and thousands died horrible deaths.

I know personally almost many of the heroes in the film: Dana Kuhn, Bob Massie, and Glenn Pierce. Bob says, this “is the story of a failed medical system, of companies and politicians putting profits before people, and of patients being kept in the dark about their very lives… It is the story of a critical piece of American history, when thousands of patients, doctors, and families came together to repair a broken system.”

Here is also Bob’s statement, which best expresses the heroism evident in those infected: “When I learned, more than twenty-five years ago, that my lifesaving injections had exposed me to a dangerous virus, I made the resolution to continue living each day, always staying true to myself and those I loved, and never giving up hope. I was lucky, and overcame them both with the help of world-class medical care and the love and support of my friends and family.” Bob is now running for US Senate.

But thousands of others were not so lucky. Like fallen soldiers in a devastating, insidious war, they are now remembered and honored in Bad Blood, which memorializes their struggle, their sacrifice and their legacy. Bad Blood is their local memorial park, their Viet Nam wall, their Iwo Jima monument. Clearly, their deaths, and the determined action of the survivors to seek justice and a change in the blood collection system and factor production, have made hemophilia treatments– and our entire blood banking syste–safer.

I cannot stress strongly enough to watch the movie. If you want to know the psyche of the US hemophilia community, understand its anguish and advocacy and determination, you must see this movie. If you want to see true American heroes, watch this movie. It’s not just a documentary, but a memorial to fallen soldiers.

Bad Blood is showing on WGBH at 10AM, 4PM, 6PM, and 11PM on June 2nd. Please forward and share this with your friends, family, community members, and anyone in the medical field.

Great Book I Just Read

Johnny Got His Gun
by Dalton Trumbo

You may have, like me, read this book in high school. It’s worth another read. Written in 1959, the novel was actually written in 1938 and published just after the start of World War II. This is the story of Joe Bonham, a youjng American WWI soldier who is horrifically disfigured and disabled. Told only from Joe’s thoughts and memories, Joe slowly becomes conscious and then must decipher what is happening to him. He realizes slowly he has lost all his limbs and his face; how does he cope with this horrific realization? All he has left is his skin and ears as sensory organs; he struggles to control his panicky mind.

Memories of home and family flood him; he reflects on why he went to war. Trumbo has a message, one that not all Americans in these times may want to hear. But we grow as humans when we read what we don’t always agree with; the horror of war, its terrible human cost. It can be viewed as a book about war and its effects (think of the thousands of scarred soldiers returning now; for second year in a row, the US military has lost more troops to suicide than to combat in Iraq and Afghan) or simply about the strength of the human spirit and surviving unimaginable loss in any field, at any time. This book is worth a read, though there are problems with run on sentences, grammar, etc. Two stars.

Refer a Friend, Get $10!

Well, the world didn’t end on Saturday so it’s back to business tomorrow. And this week we have a special campaign: to try to increase the number of people who read our newsletter PEN. I mean, there are about 17,000 people in the US who have hemophilia. Where are they? We want you to help us find them.

We are offering $10 for each new person with hemophilia or VWD that you refer to our mailing list for PEN. It’s good for them —they get to read about their disorder, new books and services we offer, and get updates on insurance. It’s good for you—you get $10 for each person who signs up. Use your FB page, email, Twitter account… and tell them to tell me YOU sent them. That way we can cut you a check.

It starts tomorrow…Monday, May 23, 7:00 am EST through Friday, May 27, 11:59 pm EST. Five days only! There is no limit to the number of friends you refer, but they must share their diagnosis and your name. And whoever refers the most number of friends will receive a copy of the movie Bad Blood: A Cautionary Tale!

What are the rules? Easy:

1. You must already be on our mailing list.
2. Your friend must have hemophilia or VWD, or have a family member under age 18 living in the household who has hemophilia or VWD.
3. Your friend must be new to our mailing list.
4. Your friend must be a US citizen.

I think that’s it; let’s see what kind of numbers we get by end of week. To refer friends, send them to our homepage, click on the sad-faced dog at the top (waiting for a friend) and your friend can fill out a form. Any questions? Call us at 978-352-7657. Thanks to all our faithful subscribers! This is a way to thank you and help others are the same time.

Great Book I Just Read
Helter Skelter by Vincent Bugliosi and Curt Gentry

Charles Manson has become a cultural reference for any violent, cultish guru with inexplicable powers over people, but what really happened that night in 1969 in Los Angeles? “The Sharon Tate Murders” has a complicated history, expertly laid out by chief prosecutor Vincent Bugliosi in this book. Slowly, deftly he reveals what happened the night the beautiful and pregnant actress and wife of movie producer Roman Polanski was murdered, along with several other people. Nearby, two more murders of Rosemary and Leno LaBianca. On their refrigerator, inscribed in their blood were the misspelled words, “Healter Skelter.” There appeared to be no motive.

The burden falls on Bugliosi to prove that Manson commanded the murders. He reveals the incredible apathy and bungling of the LAPD; the incompetence of the autopsy doctor; the brilliance of Manson and his followers–most of whom were just young adults. Step by step, lead by lead, test by test, interview by interview, he pieces together his day in court with the “Family.” The book leads you along smoothly, and is a page turner. It goes into great detail about how the case is presented in court, how the judge reacts, how Manson reacts and the counter moves by the defense. In the process, Bugliosi rips the lid off of Manson’s wild beliefs and apocalyptic plans: a wholesale destruction of society and the rise of white people to have dominion over other races.

This was one of the most famous trials of the century, told here by the most important person involved in the case, who successfully put a mass murderer, cultist, and anarchist away for life. Fascinating, frightening and powerful. Four stars.

A Decade of Dedication!

Overcast skies gave way at the last minute to sunshine as 150 guests joined Thursday night to celebrate 10 years of helping children with hemophilia in impoverished countries at the Save One Life Decade of Dedication Gala, in Topsfield, Massachusetts. It was a wonderful evening and our first major fundraiser. (Photos: [top rt] Val Bias, NHF, Laurie Kelley, Maureen Miruka; [bottom rt] Usha (India), Adriana (Romania), Maureen (Kenya)

Guests came from Texas, Tennesee, New Jersey and Ohio in the US, and India and Kenya internationally. The attendees were a mix of corporate donors, individual donors and sponsors of children with hemophilia. Adriana Hendersen of North Carolina, dressed in traditional Romanian attire, represented our Romanian partners. Even the band, Wildest Dreams, included musicians with various nationalities, as they played “Save a Life” in honor of our achievement.

Chairman of the board Chris Lamb started the evening by thanking everyone for attending, thanking our corporate donors, especially Octapharma, which was our presenting sponsor of the event. He reminded everyone that while we are now sponsoring 758 children in 11 countries, we hoped to reach our goal of 1,000 this year. Executive director Martha Hopewell recounted how Save One Life began, after I had visited the home of Mohammad Ali in Karachi, Pakistan in 1999, and learned that only $20 a month would keep that 8-year-old boy in school, to give him a better life. Save One Life offers sponsorships for individual children with hemophilia in developing countries for only $20 a month.

Then Maureen Miruka, stunningly adorned in a traditional red Masai outfit, shared what life is like in Kenya with hemophilia, and how her two first-born sons died young of complications related to hemophilia. This compelled her to do something to change the medical system and to improve the lives of those with hemophilia in Kenya. She is now president of the Jose Memorial Hemophilia Society.

During a delicious dinner with complimentary wine, I then presented the awards: Program Partner of the Year went to Hemophilia of the Philippines-Cebu, particularly to Ms. Agnes Co who always provides her reports on time and completed, making our job easier! Sponsor of the Year went to Mr. Wolfgang Marguerre, chairman of Octapharma, for his sponsorship of 70 children. And finally, a special award went to my mother, Eileen Morrow, of Springfield, Massachusetts, who was in attendance, for her amazing donation. She has gifted 50 acres of land in Charlton, Massachusetts to Save One Life to start an endowment in my grandmother’s name. The land is worth about half a million dollars and represents most of our family’s inheritance. The endowment, the Florence Ashe Hogan Memorial Endowment, will yield investment returns annually which can be used for operating expenses at Save One Life.

Finally, my friend and colleague Usha Parthasarathy, shared our experiences together traveling throughout India last fall, and reminded everyone that India represents half the number of beneficiaries in Save One Life. It’s an important country and program partner, where great things are happening. For example, Avik, a poor boy from Calcutta whose father is a humble shop owner who sells tea, completed his Save One Life sponsorship by finishing medical school, is now a doctor, and he passed along his sponsorship to another impoverished family!

Wildest Dreams then performed “One Voice,” a song they had already written, but which happens to be the name of our newsletter!

Everyone commented on how classy the event was, what a great time they had, and how proud they were of Save One Life!

To sponsor a child in need:

Thanks to the corporate sponsors, including Octapharma, CSL Behring, Baxter, Biogen Idec, Novo Nordisk, New England BioLAbs, Kedrion, FFF, ASD Healthcare and Pfizer, which made the event possible. Also sponsoring Founder’s Tables: Accredo’s Hemophilia Health Services, American Homecare Federation, Bayer Healthcare, Talecris and Kedrion, James and Heidi Ellard, Milton Kerstein and Kerstein, Coren and Lichtenstein, and Chris Lamb. BDI Pharma supplied gift bags and BDRN provided videographer services. Quality Graphics printed the programs for free and Cambridge BioMarketing provided gala design materials.

Great Book I Just Read
Wyatt Earp: The Life Behind the Legend [Kindle Edition]
Casey Tefertillera

Best known for his role in the legendary shootout at the OK Corral in 1886, Earp was more than the most famous US federal marshall. This book expertly follows his life from Kansas to Arizona to California, and his career as gambler, saloon keeper, security guard, federal marshall and small-time land speculator. He was a complex man: a Peacekeeper and expert shot who loathed to shoot; a lawman who loved to gamble and keep with prostitutes. A man who evaded bullets in the thick of a gunfight. A lawman who took the law into his own hands and led his famous vendetta against the “Cowboys” who killed his brother. No wonder he became an American legend through countless articles, movies, TV shows, and books.

This book is extremely well written and researched. Tefertiller is a journalist and is shows with his numerous references and objective style. I was fascinated by the political dueling newspapers in Tombstone and how this influenced events at the OK Corral and beyond. Tefertiller also gives an in-depth report of what happens after the shootout: the jail sentences, trials… things not shown in the glamourized movies about Earp. Most amazing is how trouble seemed to follow Earp, even years after the events in Tombstone.

The story of course is filled with real-life characters who are all now part of the legend of the Wild West: Doc Holliday, Johnny Behan, Curly Bill Brocius, Ike Clanton, Texas Jack Vermillion, Turkey Creek Johnson, Mattie, Sadie, and the Earp brothers–Jim, Warren, Virgil, and Morgan. While the movies, particularly 1993’s Tombstone, makes them into colorful characters, this book makes them real.

A highly recommended book for admirers and students of the American west and our cultural history. Four stars.

Our Heritage, and a Great Mother’s Day Gift

I had a lovely Mother’s Day with my three children, who accompanied me to Springfield to see my mom. After lunch, we went to the cemetery to see the grave of my Irish grandmother, who is our matriarch. There, my mother gave my three children a little family genealogy (which doesn’t include hemophilia, as apparently, we are the first!). I’m fourth generation Irish, and we have a huge clan in Massachusetts. I heard some stories I had never heard before; got to see the grave of my great-grandfather, Martin Hogan, which I never had seen before! And my children learned that I had two sisters who didn’t survive, and we visited their grave too. I took photos of the grave sites. It reminds me of how important it is to know where we came from.

In hemophilia, we are trying to do this with the movie Bad Blood, which is now being shown around the country, and with Barry Haarde’s Hemophilia Archives. Please check them out. And you can also read many books on the subject of our community’s past, starting with Blood, by Douglas Starr.

We can keep heritage alive in many ways, and one is in telling stories. I received a wonderful Mother’s day gift in the form of a story published in the Boston Globe today. Please read it (link below) to learn about our humanitarian work for children in developing countries. In it, you’ll read that on Thursday we celebrate our 10th year Anniversary for Save One Life, our nonprofit that helps children with hemophilia in poverty. We’ll be honoring my mom–who so generously is donating half our family’s inheritance to Save One Life in the form of land in Massachusetts–all we have ever owned of value–to start an endowment in my grandmother’s name: The Florence Ashe Hogan Memorial Endowment.

A wonderful way to help others and keep our heritage and family alive, through the strong mothers who founded them.

Book I Just Read
History of a Suicide: My Sister’s Unfinished Life
Jill Bialosky

I bought this book on my Kindle after reading a glowing review in a magazine, which praised the writing as well as the handling of the topic. Not the kind of book I normally read. In a nutshell, the author’s sister, Kim, takes her life at 20, following a life of paternal abandonment, at times absentee and mostly depressed mom, dropping out of school, abortion, cocaine, romantic loss and no spiritual anchors.

Bialosky delves deeply into reasons why, and examines her own relationship with her beloved sister, and her feelings of loss, guilt and shame. The book is at its best when it simply focuses on the real story—Kim. It wanders and loses focus when Bialosky tries so hard as an author to summon literary comparisons and strength from the classics: Melville, Shakespeare, Greek tragedies, and so on. She even reprints her own poetry on her sister from an early age. Sometimes it seems Bialosky is trying too hard to be a sophisticated writer by conjuring up psychological archetypes, when she should just tell the story from her heart and not her head. She’s trying to be a Thomas More (“Care of the Soul”) without the credentials.

But she does have credentials in heartache and the book conveys these. The book is less an insight into suicide itself, despite the statistics and reports offered to substantiate the book, than the personal story of Bialosky’s sister, who was in a downward spiral from an early age. I stopped reading after two-thirds of the way through, a thing I rarely do with any book, because I felt I was reading the same thing over and over and was not learning anything new. The book rambles, is a bit uneven, loses new insight, and tries awfully hard to be highbrow. But Kim’s story is deeply compelling. Two stars.

Three Cups of Bitter Brew: Charities Gone Bad

Last Sunday night’s “60 Minutes” was a shocker for me. I don’t watch TV–at all–but made time to watch this. Jon Krakauer of Into Thin Air fame exposed best-selling author and humanitarian Greg Mortenson as a fraud. Up until now, Greg Mortenson was someone I admired and even met at a book signing. His rapid downfall is a warning to all charities.

Mortenson’s book Three Cups of Tea has been a New York Times bestseller for about two years. Though not a particularly well-written book, it nonetheless describes a fascinating, life-changing journey: an aborted 1993 attempt on K2, Mortenson’s descent and separation from his team, and his stumbling half-dead into a remote Pakistani village. The residents cared for him, and he witnessed their utter poverty and lack of schools. He in turn pledged to build them a school someday. He turned this event into a mission, and the Central Asia Institute (CAI) was founded, a non-profit that in 2010 reported it has built over 171 schools in Pakistan and Afghanistan, providing education to over 64,000 children, including 54,000 girls. One of the highlights of the book was when Mortenson was captured for eight days by the Taliban, but won them over and left them cheering for his success.

Inspirational, motivational, miraculous… and not true.

This was devastating news to those of us who work in the international humanitarian world, who know how difficult it is to get funds, who see projects falter, who sacrifice many weeks and months, sometimes years. We also cheered for the success of someone like Mortenson, who accomplished what seemed impossible. His small charity grew, thanks to his best selling book, and according to “60 Minutes”, raked in about $60 million last year.

Shoddy journalism or outright lies? Mortenson never stumbled into a village following his K2 attempt. The Taliban never did capture him. Seems that people are coming out of the woodwork now to discredit Mortenson.

Krakauer is an excellent writer and dogged journalist, citing sources for his evidence, and naming names. One of the most disconcerting points is the tangled finances at CAI, which are obscured, poorly documented, and lack transparency. Book sales royalty goes to Mortenson, enough to make him a millionaire. Well, that’s America; nothing wrong with that. But when it is made from fabricated stories passed as nonfiction, and when they make up the backbone of the book? How about this: while he rakes in the millions, he charges CAI for the travel, posh hotels, chartered planes, and all expenses. This is wrong, wrong, wrong. According to the report, he rarely turns in expense reports. Seems that no one quite knows where a lot of the money goes.

Krakauer even visited the school overseas. Half of the visited schools are empty. Mortenson has overseen the building of many schools and many do work. But something just doesn’t add up. CAI’s own audited financial statement states that over 50% of their program expenses are spent on domestic “outreach”—50%!—and not on the schools themselves. The outreach means Mortenson’s speaking engagements, which you recall, earns him millions.

I donated money to CAI after I met Mortenson. He seemed quiet, humble and hard working. It’s his personal story that is so compelling, and now I learn it is fabricated. Who knew that he was fudging stories, milking the public’s sympathies, painting himself as an American Mother Theresa, all the while skimming and dipping the millions pouring in?

What’s worse is that this will have a ripple effect for so many charities, at a bad time in America with rising consumer costs, high unemployment and political dissatisfaction. I know so many true heroes out there, working without the masses worshipping them, I don’t think Mortenson set out to defraud the public; I think he truly wanted to make a difference but when we started our hero-workshop, the story became a myth, the myth launched sales, and money poured in, Mortenson went to the Dark Side.

It’s a tale that hemophilia charities and their donors should note well. Get a professional audit; check and document your sources before printing anything; separate professional revenues and expenses from the nonprofit ones if you work in both; submit original receipts, even for one cup of coffee; executive directors cannot and should not serve on their own boards; boards of directors should be allowed to make policies and enforce them, even to the founder; ensure that most of your program money is spent on the people you are trying to serve, and not on publicity, overhead or travel. And never think you are above the law.

Thanks to Krakauer, the attorney general of Montana will be investigating CAI to see if the charges are true. This is a bitter brew for all in charities.

Great Book I Just Read
Three Cups of Deceit by Jon Krakauer

This is the book that knocked the halo off of Greg Mortenson and cracked open an investigation into CAI’s finances and programs. A very quick read, Krakasuer painstakingly reveals the journalistic shoddiness of Three Cups of Tea, the fabrication of stories to enhance sales of the book, the recklessly spending by Mortenson to advance his own hero-status on the backs of public donations—including the “Pennies for Peace” campaign that encouraged school kids to save pennies to build schools in Pakistan and Afghanistan. All lies? That remains to be told, but surely this book rips apart the story that became a dream come true and now threatens to become a nightmare. Four stars.

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