Mirror - mirror

I know this just has to have been done before but are Steve Nash (on the right,or left) of the Phoenix Suns and British musician James Blunt (on the left, or right) the same person or at least long lost twins. Eerie.

While we've been away...

O.k. I took off last week from work and thought man, I'm gonna blog every day. This is great!

What did I do? Nothing. Absolutely nothing (in the way of blogging).

Nothing happened though, right? The Pope's visit, primary election in Pennsylvania, nothing.

I'll get back in the swing here shortly.

World Hemophilia Day!

Today is world Hemophilia Day 2008. This year's theme is Count Me In.

The World Federation of Hemophilia describes it better than I could:

This year the theme of World Hemophilia Day (April 17) focuses on registering and identifying patients: Count Me In.

It has often been said that there is strength in numbers. This is definitely true in the bleeding disorders community. As a rare disease group, in order to be heard by governments and others, getting the numbers to back up your case for support makes a huge difference.

Having accurate statistics on the number of people with bleeding disorders identifies how many people are affected and helps ensure that they get the necessary treatment. It also helps to validate claims with ministries of health and build a case for support.

The WFH’s vision of Treatment for All is that all people with bleeding disorders need access to adequate care and treatment. The first step to achieving this is to identify those patients. For 10 years now, the WFH has been collecting data from national hemophilia organizations around the world to quantify the number of people affected with bleeding disorders. Our most recent survey identifies 205,472 people with bleeding disorders in 100 countries.

On April 17 we are launching a new publication on outreach to identify patients. The WFH has also developed a number of tools to help patient organizations, hemophilia treatment centres, and others raise awareness about the need to be counted and help identify patients. These include a poster, news release, factsheets on outreach and national patient registries, as well as educational materials for patients on hemophilia, von Willebrand disease, and rare bleeding disorders.

World Hemophilia Day was started by the WFH in 1989. April 17 was chosen as the official date in honour of WFH founder Frank Schnabel, who was born on that day.

On the day, hemophilia organizations and treatment centres around the world organize gatherings, sporting events, exhibitions, and other activities to raise awareness of the issues affecting people with hemophilia.

We encourage all patient organizations, treatment centres, and corporate partners to celebrate World Hemophilia Day this year.

We want to count you in!

Tax Day

I tend to be a procrastinator. But I had no intention of waiting until the last minute to file our ‘lack of’ income taxes. We’re getting money back for goodness sakes! But still I put it off and put it off. I finally got them done on Sunday only to get an e-mail today from TurboTax telling me the eFile was rejected. I messed up on the 2006 AGI figure the IRS uses as verification for the ‘electronic signature’. So here I am on tax day scrambling to correct the eFile and resend.

Fair Tax anyone? A federal consumption (sales) tax doing away with all income taxes? Doesn’t sound like such a bad idea right now. I know there’s plenty of well-reasoned criticism of the Fair Tax, plan but at least it’s a discussion moving in the right direction. Year after year we hear about simplifying the tax code yet it never happens. Instead it gets more complicated with additional and revised deductions and credits and qualifications pushed by lobbyists and passed by well-meaning but ill-informed legislators.

It’s time for a change. Change we can believe in. Hope we can believe in. I didn’t just say that.

Heparin Problem has not gone away

I posted about the Heparin problem back in January here. Apparently the situation has gotten worse. A recent New York Times article details the latest developments.

Here's the opening graphs:

The number of suspicious deaths in the United States linked to the blood thinner heparin has risen to 62 from 19, with most of them reported this past December, January and February, according to the first detailed analyses of heparin fatalities by the Food and Drug Administration.

The F.D.A. is still investigating whether those deaths and hundreds of allergic reactions were caused by a heparinlike contaminant made in China that was added to the drug somewhere during the manufacturing process.

The drug agency defined suspicious deaths as those involving one or more allergic reactions or a drop in blood pressure. There have been no reports of deaths since the end of February, after Baxter International recalled heparin made with ingredients from a Chinese supplier.

Before we jump to conclusions about Baxter:

In addition to Baxter, companies that have recalled heparin products made with Chinese ingredients include Covidien, formerly Tyco Healthcare, and B. Braun. Both Covidien and Braun said that they had received no reports of adverse reactions from the heparin and that the recalls had been undertaken merely as a precaution.

The common thread between this product and some seemingly unrelated consumer goods is China. I posted about China's exports last year here. Coincidence for the 2008 Olympic Summer Games host? Time will tell.

Cool Perfomance Art

I'm not usually much of a YouTube guy but this is pretty cool. No protest, no motive, just let's see if we can do it. Two hundred people freezing in place for five minutes in Grand Central Station.

The Masters

It’s time. I know you can hear the first smooth strands of the piano music as the images of azaleas, dogwoods, brilliant green fairways, Rae’s Creek, the Hogan Bridge and Magnolia Lane roll across the screen. You are welcomed by the mellifluous voice of Pat Summerall and now Jim Nance. It’s Masters Week at Augusta National.

The only one of the major championships played on the same course every year The Masters holds a special appeal for both players and fans alike.

Both the club and the championship were the vision of golfing legend Bobby Jones and Clifford Roberts. The list of Masters champions reads like a roll call of golf’s greats; Gene Sarazen, Byron Nelson, Sam Snead, Ben Hogan, Arnold Palmer, Gary Player, Jack Nicklaus, Tom Watson, Phil Mickelson and Tiger Woods.

It’s Masters week at Augusta and I plan to enjoy.

Returning a favor - BLOOD4

A while back I got some nice words about my blog from a fellow blogger in Brazil. So I want to return the favor. Frederica Cassis is a psychologist at a hemophilia hospital clinic in Sao Paulo, Brazil. She believes in the power of images and uses what she calls ‘blood symbolism’in her hemophilia work. People like Frederica; our doctors, nurses and social workers are so precious to our (relatively) small bleeding disorders community.

Frederica helps the children in her care educate themselves about hemophilia and cope with living with a bleeding disorder. She has created a flashcards game to teach kids about blood clotting and hemophilia called HEMOACTION. Examples of some of the HEMOACTION cards are below. For more about HEMOACTION go here.

I can barely put two coherent thoughts together at one time and Frederica blogs in French, Spanish and English. Remarkable!

Thanks, Frederica.

Visit her at BLOOD4

Great new Product - Brūz Wear

I remember hearing about this idea a while back and though it was great. These pants for your little one have padding sewn into the pants over the knees. When Jack was starting to crawl we worried about bruises and must have gone through 4-5 sets of knee pads to help ward off the black and blue knees. He never seemed to be bothered much by the bruises but they did look nasty, which sometimes got us nasty looks.

From the 4/6/2008 Press release:

"Brūz Wear’s pants are the creation of Colorado mom, Kathryn Ames, who was determined to find a way to encourage her son, Nicholas, to crawl, climb, and stumble even though he has a severe bleeding disorder named hemophilia.

“I wanted Nicholas to feel like a normal, active little dude that could keep up with the other kids,” Kathryn said of her designs. “Other kids notice his ‘cool’ skater pants but I’m thankful his knees are protected from hard surfaces!” It was not hard to share the pants with all active children. “Many Moms on playgrounds ask where they can find Brūz Wear pants for their own kids. Hemophiliac or not – the pants are in demand!”

Good Luck to Kathryn and Brūz Wear.

MLK...40 years on

...April 4
Shot rings out in the Memphis sky
Free at last, they took your life
They could not take your pride

In the name of love
What more in the name of love?
In the name of love!
What more in the name of love?

Pride(In the Name of Love) --U2

Martin Luther King, Jr.
He was a transcendent person to whom none should be compared.
He believed in what was right. He believed in the concepts and ideals upon which this nation was founded. He believed in America. It came through in his words and it came through in his life.



I have a Dream

"I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident: that all men are created equal."

I have a dream that one day on the red hills of Georgia the sons of former slaves and the sons of former slave owners will be able to sit down together at a table of brotherhood.

I have a dream that one day even the state of Mississippi, a desert state, sweltering with the heat of injustice and oppression, will be transformed into an oasis of freedom and justice.

I have a dream that my four children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.

I have a dream today."

"When we let freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual, "Free at last! free at last! thank God Almighty, we are free at last!"



I See The Promised Land

He was tragically prescient. His "I See The Promised Land" speech was given one week before he was cut down by an assassin's bullet.

"Well, I don't know what will happen now. We've got some difficult days ahead. But it doesn't matter with me now. Because I've been to the mountaintop. And I don't mind. Like anybody, I would like to live a long life. Longevity has its place. But I'm not concerned about that now. I just want to do God's will. And He's allowed me to go up to the mountain. And I've looked over. And I've seen the promised land. I may not get there with you. But I want you to know tonight, that we, as a people will get to the promised land. And I'm happy, tonight. I'm not worried about anything. I'm not fearing any man. Mine eyes have seen the glory of the coming of the Lord."

Parents Sue After Child Inherits Hemophilia

http://www.news.com.au/heraldsun/story/0,21985,23416072-24331,00.html

http://www.foxnews.com/printer_friendly_story/0,3566,340737,00.html


This story is a few days old and it's taken a while for me to react because the emotions keep changing. Disbelief, anger, sorrow. The immediate response was here is another example of the notion so pervasive today that life should be painless and free of sorrow and disappointment and if life is otherwise then it’s someone else’s fault and they should pay.

Life is. It’s up and down, in and out, good, bad, sad, boring, exciting and everything else. It is both joyful and painful. It never goes in a straight line and no matter how well you plan and prepare the unexpected will happen. For good or otherwise. There are no guarantees.

We who have children with bleeding disorders know this all too well. Our dreams, hopes and aspirations for our perfect children were shaken to the core with the diagnosis of hemophilia or von Willebrand’s. For most of us; time, education and the support of others in the bleeding disorders community was all that was needed for those previously crumbled dreams to be rebuilt. Rebuilt and perhaps standing stronger having been tempered by the lesson that fate is fickle and dreams need not be discarded but rather reshaped and refocused.

It’s a lesson that this couple in Australia has obviously not learned or are unwilling to learn. Opting rather to wallow in victimhood and self-pity (or even more disgraceful – playing the victim card for purely monetary motives).

Laurie Kelley is right to point out that our only knowledge of the case, its facts and the litigants comes from these stories. The Melbourne Sunday Herald Sun had, I believe, the full original story. And from it I’m willing to make some inferences.

I’m no lawyer but this couple doesn't appear to be suing for ‘breach of contract’. Meaning: they were not given a 100% guarantee of having a girl. This is supported in the Herald Sun story:

"They [Lawyers for Melbourne IVF] claim the couple was given and signed an IVF consent form and a embryo biopsy consent form which stated: "If a pregnancy is achieved from biopsied embryos, we understand that further diagnostic tests are recommended to confirm the early embryo diagnosis."

"The plaintiffs knew . . . that undergoing IVF and PGD did not guarantee a female fetus if a pregnancy were to occur and could result in the sort of injury, loss and damage about which the plaintiffs complain," court documents say.

"The plaintiffs agreed to undergo IVF and PGD with the full appreciation of the nature and extent of the risks involved."

And is it possible that tests and ultrasounds were inconclusive as to the gender of the baby? Sure. How many stories have we heard of people expecting a baby of one sex because of an ultrasound only to be blessed with a child of the opposite sex? Also, given the nature of the IVF selection in this case the baby’s sex was perhaps taken for granted, by everyone.

It’s a sad case on so many levels.

“And they are claiming money to cover medical expenses, because Jess will need treatment and care for life.”

Did they count on psychiatric help after Jess starts wondering why “Mum and Dad didn’t want a boy like me. So much they considered killing me before I was born.”

“The couple say that, had they known [the baby was a boy], they would have considered terminating the pregnancy.”

Of course I find the above quote entirely repugnant. It recalls an excerpt I read from Practical Ethics a book by Pete Singer, a so-called bioethicist from Princeton University.

“When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total account of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore if killing the haemophiliac infant has no adverse impact on others, it would…be right to kill him.”

Infuriating and sad. Mostly sad.

It’s not the fact that this couple went to extraordinary lengths to have a hemophilia-free child, Allison and I had similar discussions before choosing to have another child and leave it up to God. But by pursuing this litigation this couple is demonstrating a clear resentment and disdain for the life of their son Jess. A life and condition shared by my son.

Like all children our boys with hemophilia are gifts. Gifts to be cherished and nurtured and loved. Each one with unique talents and abilities, needs and wants. They are undeniable gifts and constant sources of joy.

Jess is three now. And I hope his parents know, and he knows, that he is a gift and a joy.

Baseball...closer to home

This is Jack, my 8-year-old. Jack has severe hemophilia A but thanks to modern factor concentrates and prophylaxis he gets to do things like play baseball and basketball and soccer and swimming. And you know what (he says proudly), he's quite good.

Play Ball!

The line are chalked, the grass is trimmed and the red, white and blue bunting is hung with precision.

Baseball. America's pastime.

It's Opening Day of the 2008 Major League season.

Who's it going to be in October? Red Sox again? Yankees? Tigers?

Can the Braves rebound? Will it be the Mets? Can the Rocks surprise once more?

Or will it finally be the year for an Astros - Indians Matchup? I know. I won't hold my breath.

He is Risen...

Happy Easter! Wishes of hope and peace in this spring season of renewal.

Happy St. Patrick's Day

And what a grand day it is. The Aggies have made the NCAA, Tiger proves once again he's the best golfer ever, and the Rockets continue their improbable win streak.

All fine reasons for a bit of the Guiness.

PEP in San Antonio

Allison and I are in San Antonio this weekend for a PEP Train the Trainers. We have additional duties being on the Steering Committee. PEP is a great program for parents with kids with bleeding disorders. We are talking about some exciting efforts to really expand PEP. More details to follow.

Dawn of the Dead

I woke up this morning to find that Hillary Clinton has staggered to her feet, zombie like, and has started walking again arms outstretched. Barack Obama meanwhile has been distracted by a renewed interest in his relationship with shady character Tony Rezko and his Canada/NAFTA doubletalk.

I mean sheeezz, she was down and he didn’t put her away. Didn’t he watch any zombie movies at Columbia and Harvard? No Halloween or Friday the 13th movies? No Elm Street movies? Apparently not, because he made the same mistakes.

When you get the monster down, FINISH IT OFF! But no, he dropped his weapon, turned his back, hugged his wife and said, “We’re safe now.”

Finish the deal! You’ve got to hack off the head, cut off the arms and legs and burn all the parts. And then don’t turn your back.

Had Jamie Lee Curtis done this in 1978, no more Michael Myers, Had the kids at Crystal Lake done this, no more Jason (although they did lop off Jason’s mother’s head in the first Friday the 13th – no more mom).

Like the zombie-monsters and the zombie-monster movies themselves Hillary keeps coming back because Obama won’t or can’t finish her off. You’d think with his record fundraising his campaign could afford a machete.

Teach your children well...

Rock artist Sting worried about nuclear war and once sang that he hoped the Russians loved their children too. We might say now with confidence that the Russians did and do indeed love their children. Perhaps the commonalities between the Russians and their Western European brethren (and by extension the United States) was greater than the ideological differences. The existential struggle between the democratic/capitalist Western NATO and the communist Soviet Bloc will be studied and debated for a long time to come. But ultimately the struggle resolved without apocalyptic war because of the simple fact that neither side was willing to take the ultimate step and use the most destructive and most horrible weapons at their disposal.

What about now? Despite arguments to the contrary Western liberal democracies face another existential threat in the form of radical Islamic jihad.

Do Islamic extremists love their children too?

Harvard law professor Alan Dershowitz explores the question in this Wall Street Journal commentary.

Quotes from the piece.

Mother to son; "if you're not going to follow the steps of the Islamic resistance martyrs, then I don't want you."

Hezbollah leader Hassan Nasrallah; "We are going to win, because they love life and we love death."

Osama bin Laden; "We love death. The U.S. loves life. That is the big difference between us."

Sheik Feiz Mohammed, leader of the Global Islamic Youth Center in Sydney, Australia; "We want to have children and offer them as soldiers defending Islam. Teach them this: There is nothing more beloved to me than wanting to die as a
mujahid."

Ayatollah Ali Khamenei; : "It is the zenith of honor for a man, a young person, boy or girl, to be prepared to sacrifice his life in order to serve the interests of his nation and his religion."

So maybe they do love their children…but not in the same way. Not in a way we understand or accept as rational or moral. It is more than competing socioeconomic systems. It is entrenched in the most basic religious and cultural underpinnings of this radical subset of Islamic society.

It is something that prevents them from understanding the meaning of Golda Meir when she said; "We can perhaps someday forgive you for killing our children, but we cannot forgive you for making us kill your children."

It is something poignantly illustrated in this now widely distributed cartoon:

Texas Primary Day

Its Primary day in my two 'home' states. Born in Ohio, lived the majority of my life in Texas.

Will this be the day that finally rings the death knell for the Hillary Clinton campaign and ring in the coronation of Barack Obama. Or will it merely be the bell between the latest rounds in this heavyweight bout. We shall see in a few hours.

One thing is sure. No more campaign calls in the middle of dinner (or bedtime routine), no more political ads on T.V. on the radio or in the mail. At least for a few more months.

Big Money for Big Ben

Eight years, $102 million makes Pittsburgh Steeler quarterback Ben Roethlisberger one of the highest-paid players in the game and by far the highest in Steelers history.

"This is about being a Pittsburgh Steeler for as long as I can be. I love Pittsburgh," Roethlisberger said.

Pittsburgh loves Big Ben. Roethlisberger brought the 'one for the thumb ' Super Bowl to Pittsburgh two years ago becoming the Super Bowl's youngest winning quarterback.

Here's hoping for a bunch of jewelry for the other hand in the next 8 years.