Red Bleed 2.0

This looks good..

2011-08-24T22:43:00.001-05:00

Opening September 2nd.

Happy Independence Day

2011-07-04T10:04:00.006-05:00

The words of Calvin Coolidge ring as true today as they did in 1926 on the 150th anniversary of the signing of the Declaration of Independence.

"Ours is a government of the people. It represents their will. Its officers may sometimes go astray, but that is not a reason for criticizing the principles of our institutions. The real heart of the American Government depends upon the heart of the people. It is from that source that we must look for all genuine reform. It is to that cause that we must ascribe all our results.

It was in the contemplation of these truths that the fathers made their declaration and adopted their Constitution. It was to establish a free government, which must not be permitted to degenerate into the unrestrained authority of a mere majority or the unbridled weight of a mere influential few. They undertook the balance these interests against each other and provide the three separate independent branches, the executive, the legislative, and the judicial departments of the Government, with checks against each other in order that neither one might encroach upon the other. These are our guaranties of liberty. As a result of these methods enterprise has been duly protected from confiscation, the people have been free from oppression, and there has been an ever-broadening and deepening of the humanities of life...

No other theory is adequate to explain or comprehend the Declaration of Independence. It is the product of the spiritual insight of the people. We live in an age of science and of abounding accumulation of material things. These did not create our Declaration. Our Declaration created them. The things of the spirit come first. Unless we cling to that, all our material prosperity, overwhelming though it may appear, will turn to a barren sceptre in our grasp. If we are to maintain the great heritage which has been bequeathed to us, we must be like-minded as the fathers who created it. We must not sink into a pagan materialism. We must cultivate the reverence which they had for the things that are holy. We must follow the spiritual and moral leadership which they showed. We must keep replenished, that they may glow with a more compelling flame, the altar fires before which they worshiped."

Read the whole thing here. Its significantly longer and much better than a tweet.

Faster please...longer lasting factor

2011-06-30T12:49:00.002-05:00

Not a cure, but we'll take it in the meantime.

...thanks to collaborative work involving the laboratory of Neil Simister,an associate professor of molecular biology at Brandeis, and doctors at Children’s Hospital and Brigham and Women’s Hospital, hemophilia patients may soon have access to long-acting clotting medications that free them from the hassles of frequent infusions and from worries that an internal bleed has gone unnoticed.

Simister’s laboratory, as well as labs at the University of Texas and Ohio State University, independently and simultaneously discovered that the receptor FcRn protects antibodies from breaking down in the body. Building on that basic discovery has enabled the formulation of new hemophilia drugs.

***

...estimates that they are probably less than 12 months away from getting definitive Phase III results for both hemophilia A and B programs. The next step would be filing for FDA approval.

Original article here.

Let your Zinc-Fingers do the walking...or clotting

2011-06-29T10:23:00.002-05:00

More reports about the success of the gene therapy treatment in mice using zinc-finger proteins.

http://www.nytimes.com/2011/06/27/us/27therapy.html

http://www.pcworld.com/article/231326/living_mouse_receives_the_first_genome_therapy_cures_hemophilia.html

http://www.hhmi.org/news/high20110626.html

http://www.genengnews.com/gen-news-highlights/zing-finger-based-approach-rectifies-clotting-times-in-mice-with-hemophilia-b/81245353/

Paging Chris Christie...

2011-06-20T11:14:00.001-05:00

Proposed Tax on Blood Clotting Factor in New Jersey

ANNAPOLIS, Md., June 15, 2011 /PRNewswire/ -- PPTA opposes New Jersey Assembly Bill 2003 passed by the New Jersey Assembly Appropriations Committee on June 13 that imposes a new tax on therapies used to treat bleeding disorders like hemophilia.

The bill creates The Bleeding Disorders Treatment Fund by taxing the manufacturers of blood clotting factor in the form of a 6 percent rebate. PPTA opposes any policy that would impose a tax on the sale of lifesaving therapies. PPTA calls on the pharmaceutical industry at large to keep a close watch on this bill, which is a slippery slope towards taxing other medicines.

Not your dad's old country club golfers

2011-06-17T14:35:00.006-05:00

As Rory McIlroy tear up Congressional this music video of the 'Golf Boys'(Bubba Watson, Hunter Mahon, Rickie Fowler and Ben Crane) is just plain funny.

Hurry!

2011-06-03T10:38:00.005-05:00

Bioscience Company shows success in animal trials for Factor IX Gene Therapy Treatment

-Sangamo scientist Michael Holmes presented data from a study in mice which showed encouraging results in a specific type of hemophilia. In this case, the disease comes from a deficiency of a protein know as Factor IX. Scientists gave a single injection of one of Sangamo's zinc-finger compounds and found that mice who got the injection were able to produce Factor IX on their own in high enough levels to achieve normal blood clotting...

Original article from Xconomy.com

The Hunt for Gollum

2009-05-01T23:46:00.003-05:00

O.k. I'll break my silence with this. As an unabashed Tolkien fan and a fan of the Peter Jackson adaptations of The Lord of the Rings, finding this movie has me very happy.

Not affiliated with the Tolkien estate or Peter Jackson or New Line Cinema "The Hunt for Gollum" is a not for profit short film made by fans of the author's work. It's set for release on May 3rd.

I only just came across its existence but from the trailers it looks way cool. The story comes from the appendices of The Lord of the Rings. The appendices have so much background material that many more shorts or even features could be made from them. And that's not even getting into the epic Silmarillion (which is rumoured to be in the early stages of a film adaptation).

Here's the original Trailer:

Hunt For Gollum - Trailer One
by HuntForGollum

Make mine a Guiness...

2009-03-18T11:08:00.010-05:00

Well, I missed St. Patrick's Day here. Hope yours was good.

One noteable news item with an Ireland tie-in.

Steelers owner is Ireland nominee

6-time Super Bowl Champion Pittsburgh Steelers owner Dan Rooney has been selected to be U.S. ambassador to Ireland by President Barack Obama.

My dad went school with the Rooney boys, North Catholic High School in Pittsburgh and St. Vincent's College in Latrobe. I believe Art Jr. was in dad's class and Dan was a couple years
ahead.

UPDATE:

Well wouldn't you know it. First post after a long layoff and kinda I blow it. The Rooney's went to North Catholic, but only Art Jr. went on to St. Vincent's. Dan went to Duquesne.

Countdown

2009-03-13T08:43:00.000-05:00

Countdown to relaunch initiated.

Hiatus (hayh-ey-tuhs)

2008-12-30T21:02:00.003-06:00

Defined as a break or interruption in the continuity of a work, series, action, etc.

I fear in my case it's just been plain lazy. A lot has happened recently but I haven't felt compelled to write. I hope to do better in the new year.

Best wishes to all for 2009.

Bone marrow treatment used to combat inhibitors

2008-11-19T22:42:00.004-06:00

According to a Children's Hospital of Wisconsin press release researchers there have shown success using patients' bone marrow to treat inhibitors.

The findings were published in the 1 October 2008 issue of Blood Journal.

From the press release:

"...investigators describe how a gene-modified bone marrow transplant can be used to initiate clotting in hemophilia. This type of approach may work in the 30 to 35 percent of hemophilia patients that have developed inhibitory antibodies against the missing clotting protein.

The bone marrow is removed from the patient and stem cells are treated with Factor VIII, a clotting factor, which is placed in the platelets. The marrow is given back to the patient, who then retains the essential clotting mechanisms to stop bleeding that otherwise would lead to complications."

Seven score and 5 years ago...

2008-11-19T14:59:00.004-06:00

Today is the 145th anniversary of the Gettysburg address. Two hundred and seventy eight words, only 2 1/2 minutes to deliver yet in such brevity Lincoln relates the breadth and depth of the basic underpinnings of this great nation, this great experiment of representative democracy and federal governance.

In 2 1/2 minutes Lincoln conveyed just how unique, precious and fragile the United States of America was, is and will be. But inherent in its foundation is the principle of Liberty and the notion that "all men are created equal" that make it a concept embodied in a nation that is worth preserving, defending and dying for.

The words ring as true today are they did then.

Four score and seven years ago our fathers brought forth on this continent, a new nation, conceived in Liberty, and dedicated to the proposition that all men are created equal.

Now we are engaged in a great civil war, testing whether that nation, or any nation so conceived and so dedicated, can long endure. We are met on a great battle-field of that war. We have come to dedicate a portion of that field, as a final resting place for those who here gave their lives that that nation might live. It is altogether fitting and proper that we should do this.

But, in a larger sense, we can not dedicate -- we can not consecrate -- we can not hallow -- this ground. The brave men, living and dead, who struggled here, have consecrated it, far above our poor power to add or detract. The world will little note, nor long remember what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us -- that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion -- that we here highly resolve that these dead shall not have died in vain -- that this nation, under God, shall have a new birth of freedom -- and that government of the people, by the people, for the people, shall not perish from the earth.

Happy Birthday USMC

2008-11-10T16:14:00.002-06:00

More Israel

2008-11-08T03:11:00.006-06:00

The remainder of the PEP Train The Trainers program went beautifully. I expect wonderful things out of this remarkably talented, highly motivated, deeply insightful group of people. It was an honor and a privilege to have been a part of the team to bring PEP to Israel.

Since I was there I took extra time (a week) to travel a bit and saw some amazing sites. I am so glad to have made the trip but truth be told I don't ever want to be away from Allison and the boys for that long again.

Here's some more pics from Israel:

Jaffa Gate - Jerusalem Old City

Church of the Holy Sepulchre - site of the Crucifixion

Church of the Holy Sepulchre - Edicule - Christ's tomb

The Western Wall

Greetings from Israel

2008-10-28T17:27:00.005-05:00

I'm here with the PEP Training team doing a Train the Trainers for Israel. I'm so excited and grateful to be here. We had some doubts and apprehensions, but 1 1/2 days into the training we are so impressed with the participants. They have been remarkable.

Here's some Israel pics.

Tel Aviv

Site of the Nativity in the Church of the Nativity

Dig site in Jericho

I'm announcing a name change

2008-10-17T20:42:00.001-05:00

for the next 3 weeks I want to be known as 'Joe the Plumber'

Injured student’s suit against Tecumseh schools dismissed

2008-10-15T22:25:00.006-05:00

That's the headline from a Michigan newspaper website. The story's lead:

A lawsuit against the Tecumseh school district and an elementary teacher over bullying injuries a first-grade student with hemophilia suffered in 2005 was tossed out of Lenawee County Circuit Court on Monday.

Man! First of all bullying injuries in first grade! Hemophilia or not what the ...?
From the report:

Michael suffered severe injuries when his arm was twisted behind his back...

Now we can't know all the details from just a news article but what's going on. I'm not sure these incidents called for a lawsuit but certainly they raise some questions about the supervision or discipline at the school, child with hemophilia or not.

As parents of a child with hemophilia we strive to emphasize that Jack is not to be treated differently or excluded from school activities. He doesn't need special attention save in the event
that an injury does happen and then he needs specific medical treatment.

So with that in mind these comments (for the purpose of a lawsuit!) stung:

“They knew he had severe hemophilia. They knew they had to protect him,” argued Hanson’s attorney, James Cmejrek. Although the teacher was not in the lunch room where the second injury occurred, Cmejrek said she failed to instruct lunch room monitors to give Michael special protection because of his condition... (italics mine)

Kogenate FS approved for Daily prophylaxis

2008-10-15T22:05:00.003-05:00

The FDA has approved a "new use" for Kogenate FS.

FDA quote:

"Administering Kogenate FS to children with hemophilia A on a daily basis before a bleeding event occurs will reduce bleeding into joints and help prevent joint damage, a major cause of disability in hemophiliacs," said Dr. Jesse Goodman, director of the agency's Center for Biologics Evaluation and Research. (italics mine)

Nice bit of marketing juice for Bayer's Kogenate FS. But perhaps an underlying benefit is to signal an acknowledgement for insurers that a robust prophylactic regime should be fully embraced and properly covered.

New Orleans PEP Train the Trainers

2008-10-07T22:56:00.006-05:00

We had a great weekend! New Orleans lives! At least the parts I saw (French Quarter, Downtown/Financial District and the Garden District by Tulane and Loyola). We didn't get to the hardest hit areas that I know are still decimated and showing slow progress.

As far as the TTT - what a fantastic group we had! To a person they were talented, passionate and motivated. I expect this group will create many PEPs back in their own communities.

PEP Train the Trainers

2008-10-02T11:03:00.003-05:00

We're headed to New Orleans today for a PEP Train the Trainers (I know, it's rough but someone has to do it) and a Steering Committee meeting this weekend.

Oh yeah, my article is still up at the PEP website.

Check it out.

We're Back!

2008-10-01T08:19:00.003-05:00

Power restored and we're back home. It's good to be here. We were well taken care of staying with Allison's parents, but it's good to back.

Redbleed blackout

2008-09-17T21:16:00.005-05:00

Still suffering the effects of Hurricane Ike. No, no damage, just the inconvenience of no power and consequently no Internet.

Family is safe and house is fine, so really no complaints.

Hope to be back up soon.

108 years later - Galveston

2008-09-12T19:00:00.000-05:00

Once again Galveston Island finds itself the target of one of Mother Nature's furies. Here are some excerpts from Builders by the Sea, History of the Ursuline Community of Galveston Texas by Sister M. Francis Johnson, O.S.U. The Ursulines are an order of Catholic nuns that date back some 470 years to Brescia, Italy. In 1847 the sisters established a convent on Galveston Island. Their history is Galveston's history. Here is what was written about that fateful September 108 years ago.

There were many children enrolled that September of 1900 in the old convent by the sea. Galveston then ranked as one of the richest cities of its size in the United States. Palatial homes lined the city's streets, and girls from those homes flocked out to the academy...

As Reverend Mother Mary Joseph stood on the tiled gallery of the academy that morning and looked out toward the black clouds scudding low over the leaden restless waters of the Gulf, she frowned. Out on the campus the tall palmettos danced to the castanets of their clashing leaves. Beyond the campus stood the many beautiful homes of the city. Reverend Mother Mary Joseph cast a glance upward at the new academy and let her large, blue-gray eyes dwell on its turreted towers, oriels, cathedral-like windows , and the imposing facade. Among the many fine buildings on the island, not one could equal this, she knew. A warm glow kindled within her eyes. Her glance again sought the clouds and she wiped a trace of spray from her cheeks. Heavy storms in Galveston were nothing new...

Mother Augustine waved a hand toward the campus. "Of course! Have we not a solid brick wall, eight feet high? High waters can never push through that! They never have!"...

By five o'clock that evening an unnatural darkness had settled on the city. All knew that they rested beneath the black wings of tragedy, but the nuns, following the example of Little Mother, went calmly to each duty..

With each passing moment the fury of the storm grew worse. Outside the great brick wall that in times past had sheltered the convent had gone down before the battering ram of waves ...

The nuns taking ropes , stood at doors and windows and sought to drag in terrified victims as they drifted by, clinging to beds, to limbs of trees , to anything that might sustain them...

A trunk floated by. The nuns fished it to safety. Inside was a battered and bruised woman...

In the heart of the night, when death had all but laid his finger on every one of the fifteen hundred refugees and nuns within the convent walls, a terrifying shriek arose above the tempest din...

Meanwhile, from within one of the cells, a new voice was added to the bedlam-the wailing of a newly born baby. It was the child of the woman who had been drifting in a trunk, she whom the nuns had dragged to safety. Nor was this the only one to come into the world during this wild night in Saint Ursula's-no longer by the sea, but literally in the sea.

By this time the raging waters had come within four feet of the second floor of the monastery. The refugees could go no higher, for the third floor story had been already demolished by the winds...

It took the clear light of the next day to reveal the entirety of the awful truth of the disaster. Reverend Mother Mary Joseph stared out through the gaping hole in the convent wall...none had ever before beheld such a scene as Little Mother contemplated that blustery Sunday morning of September 9, 1900...

May God spare this stretch of Texas from the destruction once wrought upon it. And may God grant those caught in the storm's path the faith, strength and grace to survive.

Waiting for Ike.

2008-09-12T18:34:00.005-05:00

4:30 p.m. -- On a mission to find s'mores. Groceries all closed. Local Chevron has graham crackers, chocolate... but alas no marshmallows. (I prefer just the crackers and marshmallows)

6:15 p.m. -- starting to get windy...

6:20 p.m. -- t.v aerial has to come down (yes antennae, no cable, no satellite -- such as neanderthal)

6:30 p.m. -- making pizza, enjoying a cold adult beverage.

I Like Ike

2008-09-12T14:09:00.006-05:00

Um. Yea. This Ike.

Not this Ike.

We're ready. The hatches are battened.

The provisions are stocked. Now we wait. Prayers and good wishes are accepted. If not for us then for all the lives, homes and property in Ike's direct path.

It may get bumpy.

9-11-2001

2008-09-11T06:00:00.000-05:00

Seven years.

In some respects it's an eternity.

And yet it's just the blink of an eye.

Life carries on.

It must.

But let us never forget.

Typical Saturday for a kid with Hemophilia?

2008-09-09T22:32:00.008-05:00

Well, maybe not. But what's typical? A weekend choc full of events is nothing new for my active 8-year-old.

Hemophilia Walk: 10:00 am

Soccer game: 2:00 pm

Baseball game: 5:00 pm

He may not have been tired but I sure was. Hemophilia or not it takes a lot to keep up with these kids.

Now if he could put as much effort into his homework.

What an Event!

2008-09-08T13:19:00.015-05:00

Saturday's Houston Hemophilia Walk was a smash!

It was a clear, crisp beautiful day and I estimate we had nearly 500 walkers on hand for the 1st ever Houston Hemophilia Walk.

Crowd at the finish line.

As of this posting the walk has raised an amazing $178,378. A total that surpasses the New York City walk from early June. There are three more walks planned for Ohio, Arizona and North Carolina in the next two months. Good luck to them, I hope they all can raise the bar and surpass our total.

For the Killer B's, after several donation goal revisions (we started at $500 and stopped at $2,500) we've shattered all expectations and raised $3,140.

Killer B's before the walk.

Once again thank you all for such a fantastic outpouring of support and generosity.

Jack and Brandon

You can still donate if you were so inclined, see the posts below. Thanks.

We interrupt...

2008-09-02T00:44:00.010-05:00

...the vile, salacious and repugnant coverage of Gov. Sarah Palin to remind that this Saturday is the

Houston Hemophilia Walk

We have been amazed and deeply blessed by the outpouring of support of family, friends and others who have made Jack and Brandon's Killer B's team a resounding success.

Our original goal of $1,000 has been shattered. Our next goal of $2,000 is in the rear view mirror. And now we're inching close to our final goal of $2,500.

In the bigger picture the whole Houston campaign is nearing the revised goal of $150,000.

If you wish to support the Killer B's go to our fundraising page and make a donation, big or small, and help us hit our new goal and more.

To those who have helped thank you so much. Your generosity is beyond touching and beyond words. I am left with simply; Thank you, thank you, thank you.

Poorly researched hemophilia article leaves wrong impression

2008-08-29T11:30:00.000-05:00

Every so often I search the news for hemophilia-related articles. Being fully enmeshed in the bleeding disorders community I think I have a fairly full understanding of hemophilia. But I can understand how journalists can get details confused and some explanations fall short. No problem. As long as the basics and general information are related accurately they get a pass.

But this article coming out of India leaves the reader with the appalling impression that hemophiliacs develop HIV and hepatitis. All on their own.

From the article:

Hemophiliacs in the health centres who are in their late 60’s or 70’s are crippled and disabled. This was due to the non-seriousness attitude of the governments and the lack of reach of proper medication. If this disease is not treated at the right time, it can lead to permanent disability or HIV and hepatitis.

Nothing else. no explanation of viral transmission from tainted blood supplies. There's certainly a long and documented history of this travesty to draw from.

The blurb at the top of the article is similar:

Today there are over 100,000 people affected with hemophilia in India. It can lead to permanent disability, HIV or hepatitis if not detected at the right time.

Frankly it's a shame. Much of the information in the article is accurate, if explained poorly. By the time I read the article it had already had 392 views. Potentially 392 misinformed impressions about hemophilia and HIV/hepatitis. Unfortunately this is how unwarranted biases and prejudices begin.

(Side note: funny how the article employs British spelling: centres, organisation; yet doesn't use the spelling haemophilia. Not important, just funny)

Pop !

2008-08-29T10:01:00.007-05:00

That was the sound of the Democrat Denver party balloon.

Less than 12 hours after Sen. Barak Obama's coronation the headlines at all the media outlets read:

It's Palin!!

Bold. Risky. Exciting!

Definitely not the usual Republican fare.

I have a dream...Congratulations Sen. Obama

2008-08-28T17:05:00.009-05:00

It is fitting that Sen. Barack Obama accepts the Democratic Party's presidential nomination tonight. Forty five years after Rev. Martin Luther King gave his monumental "I have a dream" speech on the steps of the Lincoln Memorial a black man stands where no black man has stood before; at the top of his party's ticket and one step from the office of President of the United States.

From MLK's speech that day:

"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.”

And

"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!"

Congratulations Sen. Obama.

I agree with Sen. Obama on very little but I truly hope he is judged fairly not by the color of his skin but by the content of his character (and his standing on the issues).

Local article on Hemophilia and the Hemophilia Walk

2008-08-27T14:41:00.004-05:00

Here's a nice article profiling a local family and hemophilia and publicizing the September 6th Houston Hemophilia Walk supporting the Lone Star Chapter of the NHF.

(Katy, Texas is a suburb just to the west of Houston)

PEP Program Article

2008-08-26T12:00:00.000-05:00

Self-serving bump - aw come on, can you blame me.

A new article is up at the PEP Program website. This one by someone familiar... me.

Go have a read and take a look around.

Houston Hemophilia Walk

2008-08-26T07:00:00.000-05:00

UPDATE!! -- We've passed our original goal of $1,000. Thank you one and all!! So now we're going for a new goal of $2,000 -- Help out if you can, details below.

Holding out the tin cup, passing the hat...all that. We're raising money for the Lone Star Chapter of the NHF in the 1st Hemophilia Walk. Houston is one of only 5 cities hosting these inaugural hemophilia walks this year.

Hold on a minute...need to watch Michael Phelps go for gold number 8. Yes! Simply amazing! 8 gold medals, 7 world records, Unbelievable!

Now back to our regularly scheduled programing.

Our team is the Killer B's for Brogan and Buchanan. My Jack and his friend Brandon Buchanan.

Brandon and Jack

Here's the letter we're sending out:

Hi friends and family,

How often do you stub your toe, have a bad fall, or bite your tongue? Chances are these are common experiences in your life. Though painful, they are not life threatening. However, for someone with a bleeding disorder, these events can mean another infusion or a trip to the ER. As you know, our son Jack has severe hemophilia A. He gets three infusions a week to prevent internal bleeding. The cost of the clotting factor that he infuses is about $1.20/unit and he receives over 1900 units (3 times a week). As he grows, so does the amount he will need. He has recently started infusing himself; he learned to do this at hemophilia camp this summer.

The National Hemophilia Foundation (NHF) is an organization dedicated to providing families with the education and support they need to deal with the challenges that come with bleeding disorders. We hope to one day find a cure for this condition, but in the meantime will you help us to continue the work of these organizations?

On Saturday, September 6, 2008, the Lone Star Chapter of the NHF will be participating in a nation-wide fundraising and awareness event. The 1st Annual Houston Hemophilia Walk will be held at Minute Maid Park. Registration begins at 9:00am, with the 3K walk beginning at 10:00am.

We would be honored if you would consider walking with Jack's team, "The Killer B's". You can register online at http://www.active.com/donate/hemophiliaWalkTX/PBrogan2 . There you will be able to click on 'register for this event' in the black tool bar. It costs nothing to walk. If you are not able to join us for the walk, but would like to donate instead, you can click on an amount in the yellow box on the right side of the page. There is no amount too small.

Thank you for your support and we hope to see you at the walk!

Sincerely,

Allison Pohl and Pat Brogan

Happy St. Brogan's Day

2008-08-25T15:11:00.004-05:00

Really!! Who knew? Bumping around the web a little bit today and came across this. Thomas Brogan is no relation I know of, but, you never know.

Apparently there's t-shirts and other gear.

The background on St. Brogan is a little thin and sketchy (kinda like me, although I can no longer be considered thin). See here and here.

Oh, well, raise a glass; Slainte!

Where's the parade?

Back to school...

2008-08-25T09:33:00.004-05:00

for Jack and 1st day of school for Carrick. Jack starts 3rd grade and Carrick starts kindergarten. I'd like to think that Jack will look after Carrick and help him out. But he probably won't. More likely he'll try to ignore Carrick. But that's o.k. the little guy will do just fine.

Irreconcilable differences

2008-08-23T21:52:00.004-05:00

Barak Obama announced Sen. Joe Biden as his vice presidential running mate Saturday. And in picking Biden and not Sen. Hillary Clinton, Obama eliminated what would have been a sure thing. Obama/Clinton would not lose in November. All that was needed was a unified Democratic party and it would have been a sweep into the White House, and further gains in the Senate and the House.

But there's too much water under that bridge, too many irreconcilable differences. Too much history for an insecure novice, in over his head , like Obama to take.

So what does he do to bolster his hope and change campaign? Choose a 36-year Washington veteran. Now there's change you can count on. That's the kind of change that for the first time in one's adult life can make you proud of America. That's the person who said this about his now running mate, "I think he can be ready, but right now I don't believe he is. The presidency is not something that lends itself to on-the-job training." Yeah what else Joe? "I mean, you got the first mainstream African-American who is articulate and bright and clean and a nice-looking guy. I mean, that's a storybook, man." That's right Joe, articulate, bright and clean, don't forget clean.

Thanks Joe and thanks Barak. This is a gift that keeps on giving.

PEP Program Article

2008-08-22T20:22:00.004-05:00

A new article is up at the PEP Program website. This one by someone familiar... me.

Go have a read and take a look around.

Insurance Articles and Commentary

2008-08-21T00:37:00.003-05:00

Lack of Insurance, High Medical Costs Put More in a Bind

Free-Market Medicine

Health insurance disinformation

McCain's health insurance plan: More radical than Democrats'?

The Real Truth about Drug Companies

1st Annual Houston Hemophilia Walk

2008-08-16T21:58:00.008-05:00

Brandon and Jack

Here's the letter we're sending out:

Hi friends and family,

How often do you stub your toe, have a bad fall, or bite your tongue? Chances are these are common experiences in your life. Though painful, they are not life threatening. However, for someone with a bleeding disorder, these events can mean another infusion or a trip to the ER. As you know, our son Jack has severe hemophilia A. He gets three infusions a week to prevent internal bleeding. The cost of the clotting factor that he infuses is about $1.20/unit and he receives over 1900 units (3 times a week). As he grows, so does the amount he will need. He has recently started infusing himself; he learned to do this at hemophilia camp this summer.

The National Hemophilia Foundation (NHF) is an organization dedicated to providing families with the education and support they need to deal with the challenges that come with bleeding disorders. We hope to one day find a cure for this condition, but in the meantime will you help us to continue the work of these organizations?

On Saturday, September 6, 2008, the Lone Star Chapter of the NHF will be participating in a nation-wide fundraising and awareness event. The 1st Annual Houston Hemophilia Walk will be held at Minute Maid Park. Registration begins at 9:00am, with the 3K walk beginning at 10:00am.

We would be honored if you would consider walking with Jack's team, "The Killer B's". You can register online at http://www.active.com/donate/hemophiliaWalkTX/PBrogan2 . There you will be able to click on 'register for this event' in the black tool bar. It costs nothing to walk. If you are not able to join us for the walk, but would like to donate instead, you can click on an amount in the yellow box on the right side of the page. There is no amount too small.

Thank you for your support and we hope to see you at the walk!

Sincerely,

Allison Pohl and Pat Brogan

Plasma provider consolidation

2008-08-13T18:47:00.005-05:00

According to a report on Forbes.com CSL Limited announced it is buying Talecris Therapeutics Holdings. CSL, once an Australian governmental body, has been sucking up the competition and complementary businesses for much of the 2000's. In 2000 CSL acquired ZLB Bioplasma AG, then scooped up Aventis Behring in 2004.

Acquiring Talecris, formerly Bayer's plasma products division, CSL has bolstered its position in the plasma market.

Mergers and acquisitions are the nothing new in business and even for us in the bleeding disorders community. But this recent trend of consolidation for both the home health care providers and factor producers coupled with emerging trends in insurance coverage toward sole sourcing and limited choices really necessitates some attention and will require constant vigilance.

Inhibitors help combat AIDS?

2008-08-09T09:00:00.000-05:00

The lead from the article:

Antibodies found in lupus and some hemophilia patients may prove to be a potent preventative against HIV transmission and progression, according to researchers who presented two new studies yesterday at the 17th International AIDS Conference in Mexico City.

Antibodies in some hemophilia patients? Could these be inhibitors? If not what are they? What else could be unique to hemophilia patients?

Link to the article.

Swifter, Higher, Stronger

2008-08-08T19:15:00.004-05:00

It's Olympics time once again. I've always had a deep affection for the athletic endeavors of the Olympics. And yes, an unabashed surge of national pride and spirit, rooting for our American team. From Bruce Jenner and Mark Spitz in 1976, the hockey team in 1980, everything in 1984; Carl Lewis, Edwin Moses, Mary Lou Retton, and so on and so on. I love the Olympics.

Political sub-texts aside (China is still a manifestly repressive society) I hope the games go well and do indeed lead to greater modernization and greater freedoms for this largest (1.3 billion people) of nations.

Baxter warned by FDA for misleading email

2008-08-07T14:00:00.001-05:00

The Food and Drug Association has reviewed a "Clinical Thank You Email" in which Baxter Healthcare Corp. overstated claims about their inhibitor bypassing clotting complex FEIBA VH.

The agency ordered Baxter to stop using the e-mail and any promotions that exaggerate the drug's safety and effectiveness. "By promoting misleading safety and efficacy claims, you are potentially encouraging the unsafe use of FEIBA VH," the FDA said in the letter dated July 7.

Baxter isn't a small outfit. You'd think they would have access to their own data. Why would they exaggerate these claims? Methinks someone's in trouble.

Hemophilia friend, Skip Caray

2008-08-07T00:01:00.003-05:00

Longtime sports broadcaster Skip Caray died Sunday at the age of 68. Much about Caray we know. He was the voice of the Atlanta Braves for 33 years. He was there when Ted Turner transformed the Atlanta television station, WTBS, into a cable superstation. He was the son of legendary Chicago Cub’s announcer Harry Caray. And his “Braves win, Braves win” rang loud and often (irritatingly so for a Pirates and Astros fan) since the late ‘80s.

Other things were not so well known. He devoted many hours to volunteer work. Much of it with Camp Twin Lakes, a Rutledge, Georgia camp for kids with special needs. And according to several news reports Caray also worked with the Hemophilia Association.

Why wasn’t this more known?

I assume by Hemophilia Association it is meant Hemophilia of Georgia. Perhaps he became associated with hemophilia through his involvement with Camp Twin Lakes, the location for the Georgia hemophilia camp. But I don’t know and would like to know more.

Many folks donate time, money and effort out of a sheer sense of purpose. They ask nothing in return preferring the anonymity of their charity. God bless them. They are dearly needed. But at the same time this bleeding disorders community is desperate for a national voice or identity. We are such a small community yet with such great needs that there has to be a better effort to make use of the connections we have and to garner more. Even though celebrities like Skip Caray are more niche (sports) or regional, when good people like him are associated with causes like hemophilia it can only reflect well on the bleeding disorders community and perhaps encourage someone else of notoriety to lend a hand.

I’m glad to know the folks of Georgia had a good friend in Skip Caray. Too bad many of us learned of it only at his passing.

Adios, Edouard. We hardly knew you.

2008-08-06T09:00:00.004-05:00

Which is just fine. All in all, not bad. Some needed rain, a day off from work. One of those rainy days where you just don't do much.

I took the boys to the movies and saw Journey to the Center of the Earth. I almost choked on the ticket prices. Not realizing the movie was 3D, $29.00 for one adult and two kids tickets was quite a surprise. The plastic throwaway 3D glasses must be expensive. The movie was o.k. The boys liked the 3D effects although we should have sat closer to the screen so it would occupy the whole frame of vision. The story was blah but it had enough action and effects to keep a 5 and a 8 year old boy entertained.

¿Que pasa, Edouard?

2008-08-04T22:48:00.004-05:00

Tropical Storm Edouard seems to be heading straight toward Galveston and Houston beyond. Will it really be much of anything? Who knows?

Three years ago, just weeks after Hurricane Katrina, Hurricane Rita bore down on the Texas coast. Hundreds of thousands tried to evacuate the area only to run out of gas on the congested highways of the Houston area. Luckily for us (we stayed put) Rita veered eastward and around Houston we had ten's if not hundred's of downed leaves. Points east did not get off so lucky.

So what will happen this time? Only time will tell. But we're good. Factor, food, water, beer; all the essentials.

Self-Infusion Success !!

2008-08-03T11:40:00.004-05:00

Jack did it! Yesterday before his baseball game Jack tried self-infusion again and got the vein. Under Allison's tutelage, Jack has been working on self-infusion since he got home from camp a week ago and yesterday was THE DAY.

We are so proud of him. This is a huge step toward full self-sufficiency and ownership of his hemophilia care.

Congratulations Jack!!

Keep it up!

Lifetime Insurance Caps

2008-07-28T23:11:00.004-05:00

Here's a good article on lifetime insurance caps.

As medical costs have risen these cap limits have remained stagnant and they need to change.

But just as important we, as consumers of medical care, need to demand transparency in medical costs. Everything; doctors visits, procedures, tests, examination gloves, alcohol swabs, everything. There are countless instances of a provider having two prices; one charged to an insurance company, and one to the guy paying out of pocket. This cycle of provider charging insurer, charging employer, charging employee with higher premiums and higher deductibles has got to stop. It's a rigged system where costs are hidden and choices are narrowed. Like the three gas stations down the street at the corner that compete for my fuel money it's time for the medical industry to join the rest of the market system and compete my health care dollars. Let the consumer be the judge of what's best for them considering services, prices, location and everything else.

I know, I know. Universal health care. I don't buy it. Costs will continue to rise, choices will diminish as will the number of docs and other health care professionals leading to a reduction in quality of care.

D. C. Highlights

2008-07-24T21:28:00.010-05:00

The boys and I had a great time in D. C. earlier this month. We were there for just under a week and I tried to pack in as much as the boys could handle. Being there over the 4th of July weekend made for some large crowds and some long lines so a few of our destinations had to be scratched.

We did get our fill though; The National Portrait Gallery, The Smithsonian Museum of Natural History, The Marine Corps Museum at Quantico, Mt. Vernon, a Tour of the Pentagon, of course the Sunset Parade at the Marine Corps Memorial at Arlington National Cemetery, the Smithsonian Air and Space Museum near Dulles Airport and the Bull Run (Manassas) Battlefield.

Here's a few snapshots.

Still not an excuse to spend the day playing Wii

2008-07-23T12:13:00.003-05:00

Aerobic capacity lower in boys with hemophilia

From Reuters.

NEW YORK (Reuters Health) - Boys with hemophilia have a lower aerobic capacity than their healthy peers, according to study findings published the Journal of Pediatrics. However, the overall muscle strength of these children is comparable to that seen in the normal population.

None of the participants experienced joint or muscle bleeds or other adverse events because of participation in the study and all of them were able to perform at maximal or near-maximal levels on exercise tests.

Compared with their healthy counterparts though, the peak oxygen capacity, heart rate, and work capacity were significantly lower among the boys with hemophilia.

However, total muscle strength was normal in the patients compared with the healthy controls, and almost no joint impairment or decrease in functional ability was found.

Thanks to prophylaxis our boys can do most of the activities other boys do and it's good to see there were no joint or muscle bleeds.

The study shows that boys with hemophilia have lower aerobic capacity but doesn't explain why. Is there still a predisposition to a more sedentary lifestyle? Do they 'get away' with being less active because of hemophilia? Or is a lower aerobic capacity a by-product of hemophilia?

Off to Kamp Krusty

2008-07-22T10:57:00.004-05:00

Well, maybe not Kamp Krusty, but Camp Ailihpomeh (hemophilia backwards). Jack is at hemophilia camp this week, he left Sunday morning. Here's hoping for some positive peer pressure and successful self-infusion.

Camp is again at the great Camp John Mark near Meridian, Texas. I'm sure it's hot as all get out but the boys will, as always, have a fantastic time. Pics from camp are updated daily at the Lone Star Chapter Website, here. Below is the first one of Jack (third from right) and his cabin-mates.

In D.C.

2008-07-06T19:29:00.008-05:00

The boys and I are in the D.C. area for the next few days. We're here to attend a Marine Corps Sunset Parade. My brother Mike is the hosting officer on July 8th. On the 4th we opted to see fireworks at Quantico rather than deal with the crowds at the Mall in D.C.

Yesterday we did some sight seeing in D.C. Went to the National Portrait Gallery and the National Museum of Natural History. Pics (so far) below.

Happy Independence Day

2008-07-04T02:08:00.008-05:00

It's been crazy around here. So we're due for a break. I'm taking the boys to D.C. for a short vacation (hopefully updates and details to follow) which will give Allison some breathing room to catch up and maybe get ahead of her nursing studies.

In keeping with the patriotic flavor of the holiday here's a few pics from our front yard and the sunflowers Carrick planted in our new front planting bed. These things are not just sunflowers or giant sunflowers but were labeled 'mammoth sunflowers.' I think they live up to their name.

The second pic is of the proud gardener and the third should give a little scale.

Happy 4th everyone!

Golf, the good and the funny

2008-06-15T22:35:00.005-05:00

Holy Smokes! Did you see Tiger finish his fourth round to force a playoff with Rocco Mediate at the U.S. Open? Unbelievable. Playing as inconsistently as he was on the bum knee. Amazing.

We have our own little golfer around here. In the last couple of weeks Jack has gotten a taste of some real golf and is doing quite well.

Two weeks ago on June 2, the Lone Star Chapter had the Matthew Thomas Memorial Golf Classic. The tournament is one of the chapter's major fundraisers and a fun time (even if it is brutally hot). The last few years the events have included a junior tournament and the past two years Jack has played. This year he came in second overall out of 20-25 kids of all ages (into the teens) and won a junior set of clubs.

Jack has a pretty good swing, what I call an athletic swing. I've taken the boys to the driving range a few times but except for the Matt Thomas tournament Jack hadn't played on a real course. So for him to do so well gave me ample motivation to hit the links with the young guy.

So this weekend we got out twice and played on 'real' courses. First, in keeping with Father's Day weekend, Jack and I went out with my dad on Friday and Jack posted some good scores including a par on a par three. Next, on Saturday, we joined my brother Tim and his son Zach and got in another sweat-drenched 18. Again Jack played well with another par on a par three and a par on a shortened par 4. Allison says we have to get him lessons so I don't screw up his swing with my instructions.

I don't have any pics from the tournament or this weekend but here's some recent video from the driving range. Jack looks good but also pay attention to Carrick in the background. God bless him, it's hilarious.

Been awhile...

2008-06-08T11:35:00.003-05:00

Life interferes. It's been a crazy two weeks. School's ended for the boys and summer camps have started, work has hit the hectic/stressful season but biggest of all Allison has started nursing school. She going to the UT School of Nursing at Houston accelerated program. It's two years of nursing crammed into one. Lots of reading, lots of online lectures and lots of studying. Did I mention reading and studying. It occupies the majority of her time. By the time its over the boys may feel like they have a single parent. But in the end it will be more than worth it. For her and us.

Happy Memorial Day

2008-05-26T16:03:00.002-05:00

On this day we remember all the men and women who gave their lives in the service of our country. This nation that has expended more treasure and given more blood in the service of the rest of the world. This nation, as Ronald Reagan said, stands like a shining city at the top of a hill. Shining as a beacon to all who desire liberty. Because of the sacrifice of our servicemen and women, this nation has stood and still stands as the greatest nation on the face of the earth.

God bless America.

Bush signs GINA

2008-05-23T10:19:00.004-05:00

On Wednesday President Bush signed the Genetic Information Nondiscrimination Act of 2008 into law. The president's critics and detractors are numerous and varied, but here is something where we can stand together on the same side and approve of this landmark legislation.

*UPDATE*

From NHF:

On Wednesday, May 21, 2008, President Bush signed historic legislation protecting Americans from discrimination based on the results of genetic testing. The bill was recently passed by Congress with strong bipartisan support after a 14-year struggle and dedicated efforts by a coalition of healthcare and other advocacy organizations, including the National Hemophilia Foundation.

"This is a tremendous victory for the hundreds of thousands of Americans affected by genetic disorders," said Val Bias, CEO, National Hemophilia Foundation. "It was a long and hard effort to achieve this day".

The new law prevents employers and insurance companies from either requiring genetic test results or from using genetic information as the basis for decisions around employment or insurance coverage. In the bleeding disorders community, the law has particular significance for women who are considering genetic testing to determine whether they are carriers. In the past, some individuals have avoided such tests out of fear of possible discrimination. The law does not affect those who have been diagnosed with specific conditions.

Factor, prophylaxis and…complacency

2008-05-22T13:52:00.003-05:00

For parents of boys with hemophilia anti-hemophilic factor products are heaven-sent. Combined with a prophylactic regimen the results are amazing. Although bleeding activity and severity can vary widely we have found that with prophylaxis Jack has few, if any, breakthrough bleeds and the restriction on his activities (within reason) are next to nothing. And this is wonderful. I’m sure there are untold numbers of people who see this active, go-for-it boy who would be shocked to learn he has a genetic condition that in the not too distant past would have likely resulted in debilitating joint damage or, even worse, an increased risk of death.

Jack has been on prophylaxis for nearly five years now, following a year of immune tolerance to defeat inhibitors. In that time we’ve transitioned from a port to peripheral sticks and with each step and a greater awareness (both Jack’s and ours) of recognizing and treating bleeds the results have been liberating.

But there’s a flip side. At times we can be lulled into complacency. A missed infusion here, a missed infusion there and nothing goes wrong. No harm, no foul; right? Busy schedules, few bleeds and we think we can skip a day and get back on schedule tomorrow. But it doesn’t always work out so well.

We were caught missing an infusion last week. At a time when we should have been hyper-vigilant we let our guard down. Our normal prophylaxis is M-W-F but sometimes we will purposefully alter the schedule to match up with games, events or activities to ensure that Jack has factor on board.

Now, Jack is finishing baseball and starting swim team practices. So last week he had swim practice on Wednesday, a baseball game Thursday, swim again Friday and baseball again (playoffs) Saturday. He had his normal infusion Wednesday morning but we missed his Friday infusion. On top of all this activity Jack planned to spend the night Friday at a friend’s house. So of course we got a call around 10:00 pm from Jack saying his leg was hurting and it was painful to walk. After all his activities it's no wonder. I collected him within 5 minuets, came home and Allison infused and Jack was off to bed. We suspect it was a soft-tissue bleed about mid-thigh. The next morning Jack couldn’t walk from the bedroom to the couch. He had a 9:00 am game so we infused again about 8:00 am. I dreaded the phone call to his coach.

I told Jack that if he couldn’t play he would still put on his uniform and go cheer his teammates. He said he wanted to give it a go, so we wrapped his thigh in an ace bandage and went to the ball field. I’m not sure the ace bandage really did anything save boost his confidence, but by the time we got to the field he could walk fine and after warming up he was jogging and running without pain.

He played and played well helping his team win. I’m proud of him for calling us when his leg was hurting and getting out and trying when he was unsure if his leg would hurt. He handled the situation like a pro. It was his parents who dropped the ball, letting distractions get in the way of the proper infusion schedule.

Of course we use this as a ‘teachable moment,’ using our mistake to show how important it is to take care of yourself and follow the proper schedule so as to avoid injuries like this.

Undoubtedly this won’t be the last missed infusion (try as we might, it’ll happen again) but it goes to illustrate that all the factor products in the world do you no good if not used effectively and how easily we can be lulled into a false sense of security when what is really required is constant vigilance.

Hooray for the Home Team

2008-05-20T08:18:00.005-05:00

A group of researchers at The University of Texas Health Science Center at Houston have developed a modified Factor VIII protein that will help treat inhibitor patients.

From the press release:

With a shortage of the blood-clotting protein Factor VIII (FVIII), people with Hemophilia A typically receive injections of FVIII derived from plasma or produced synthetically to control potentially life-threatening episodes of bleeding. Unfortunately as many as 1 in 3 people with Hemophilia A produce inhibitor antibodies, which attack the externally-administered FVIII and negate its blood-clotting benefits.

To combat this problem, scientists in the laboratory of Sudhir Paul, Ph.D., at The University of Texas Medical School at Houston, developed a chemically modified version of FVIII which during laboratory tests neutralized these inhibitor antibodies, thus paving the way for the correction of the blood-coagulating process. The modification is called electrophilic FVIII analog (E-FVIII).

“It’s a two-step process,’’ said Paul, the senior author. “The E-FVIII permanently inactivates the antibodies that inhibit blood clotting in 20 to 30 percent of patients receiving Factor VIII replacement therapy. Once the antibodies are cleared, additional FVIII can be injected.” The study involved blood donated by eight people with FVIII-resistant Hemophilia A.

Miguel Escobar, M.D., of the department of pediatrics and internal medicine at the UT Medical School at Houston and the Gulf States Hemophilia and Thrombophilia Center, led the clinical aspects of the work.(emphasis mine)

This is great news from just around the corner. Congratulations to Dr. Escobar and the rest of our HTC team. We are so very fortunate that Houston has one of the premier Medical Centers in the nation, if not the world. We are doubly blessed for Jack to be under the care of Dr. Keith Hoots and the whole Gulf States HTC staff (the finest in the nation, and yes we’re biased).

Project DOCC

2008-05-19T12:33:00.004-05:00

I helped out with Project DOCC on Friday. What’s Project DOCC? Well, from the Houston Project DOCC website:

Project DOCC, a groundbreaking national program for pediatric physicians-in-training, has a simple goal:

To improve each patient's quality of life by teaching physicians-in training the effect of chronic illness on patients and their families.

Created in 1994 by three parents, Project DOCC's philosophy is that, by understanding how families deal with illness and or disabilities out side the hospital setting, pediatric physicians-in-training become better and more compassionate physicians.

Project DOCC's teacher - parents and guardians of children with special medical needs - provide physicians with a unique perspective on culturally effective, family-centered care.Project DOCC Houston is a non-profit organization that is a collaboration of Houston-area families of children with special health care needs, Baylor College of Medicine's Department of Pediatrics and Texas Children's Hospital. Project DOCC Houston is mandatory for first year pediatric physicians-in-training as one of the teaching modules of Pediatrics 101.

The Project DOCC program is made up of three components; the home visit, the parent interview and the Grand Rounds panel presentation.

Both Allison and I have participated in the home visit portion (check out here for more on the parent interview and Grand Rounds). During the home visit the resident(s) come to the home of a special needs child to get a feel for a day-in-the-life of that family. We go over medications and dietary issues and storage issues for supplies. We get into insurance and Medicaid, home modifications for handicap access, marital and financial stresses and so much more. There’s also a ‘visiting parent’ who interjects their own experiences as well as providing a more global perspective of the challenges of caring for a special-needs child.

I take special satisfaction from being able to tell our story and educate another doctor about hemophilia and challenges that come with it.

So on Friday I was the ‘visiting parent’ and we had a very interested and observant resident. I’ve done home visits where we’ve had two or three residents and, honestly, having the undivided attention of just one is so much better. With three residents or even just two one can shrink back and not engage, letting another resident take the lead.

All in all it was a good visit and hopefully enlightening and productive for the resident.

Check out to see if Project DOCC is in your area and how you can get involved.

FDA approves new NovoSeven product

2008-05-15T08:00:00.001-05:00

On May, 13 the Food and Drug Administration (FDA) approved Novo Nordisk's new formulation of NovoSeven(R)RT recombinant factor VIIa product. What makes the new Novo so novel? The RT is for room temperature. RT can be stored at room temperature. According to the press release the new NovoSeven will be available in higer concentrations for smaller infusion volumes.

From the Press Release:

NovoSeven(R) RT has been manufactured to be room temperature stable (from 36 degrees F to 77 degrees F outside a refrigerator). The new formulation does not require refrigeration and can be moved in and out of the refrigerator. In addition, NovoSeven(R) RT has a higher concentration for lower infusion volumes and quick administration. The needed infusion amount is almost half of that needed with the original NovoSeven(R).

Unassisted triple play

2008-05-14T19:10:00.004-05:00

No, not Jack in little league,but the Tribe's Asdrubal Cabrera. On Monday night the Cleveland Indian second baseman turned only the 14th such feat in Major League history. To put it into perspective there have been 15 perfect games which makes the unassisted triple play the rarest of baseball achievements. What's really cool about the play-by-play call is that even before Cabrera caught the ball the announcers were calling 'triple play, triple play.' The runners were moving on the pitch and the broken bat liner was so close to second base Cabrera couldn't help but turn the rare three-out play.

Asdrubal Cabrera Turns Unassisted Triple Play
Uploaded by Machochip

'Good night, neighbor'

2008-05-13T16:44:00.005-05:00

Veteran Houston newsman, Ron Stone, passed away Tuesday after a bout with cancer. Ron Stone was on the air on Channel 2, KPRC when my family moved to Houston in the late 70's. The team of Stone, weatherman Doug Johnson and sportscaster Ron Franklin were the best, most relaxed, funniest and down to earth news team I've ever seen.

Stone and company were the genuine article. He signed off each night with, "Good night, neighbors." And one felt that he truly meant it and I know he did. He came into our homes each night and gave us the news as a neighbor. When he presented the news it was like you could go outside, walk over to the fence and continue the conversation with him.

For so many years he was a part our Houston life, first on Channel 2 then picking up for Ray Miller on 'The Eyes of Texas' and later with his production company, Stonefilms of Texas.

I also remember staying up as late as I could manage and watching Ron and the rest on the local broadcast of the Jerry Lewis MDA telethon.

I haven't thought about Ron Stone in a while, things change and you move on. But now that he has passed it's hard to forget him. Thanks for years and good night, neighbor.

KPRC report.

Houston Chronicle article.

Channel 11, KHOU report

Channel 13m KTRK report

'Impossible is nothing'

2008-05-12T22:02:00.006-05:00

This is a great story about an amazing young woman from the Wichita Eagle. Ngoc Trang Nguyen is the valedictorian at East High School in Wichita, Kansas. That's nice, but so what, you say. Four short years ago, having emigrated from Vietnam, she spoke no English. By junior year, she was doubling up on math and science courses and getting straight A's. Trang plans to attend Creighton University in Omaha and major in biochemistry. But that's not the best part.

"I imagine myself in a lab coat," she said. "One of my wishes is to figure out the cure for hemophilia, which is a blood disorder."
In Vietnam, one of Trang's best friends had hemophilia. "But his family was so poor, they could not afford medication, and he suffered tremendously from that," she said. "This is what inspires me."

This is a story that warms the heart on so many levels. It's fantastic that someone so bright wishes to work on a cure for hemophilia. It also shows that in the meritocracy of this great nation of ours opportunities exist for anyone. With encouragement and dedication, hard work is rewarded regardless of ones background. It's there for the taking. As the Nike slogan says "Just Do It."

Happy Mother's Day

2008-05-11T22:08:00.004-05:00

I hope it was a joyful and restful day for all the Mothers and Grandmothers today. These are the ladies in our lives that keep the rest of us from falling apart. Without them we'd be hungry, dirty, smelly and wrinkled.

So it's appropriate to remind everyone of Project Red Flag, NHF's awareness program for Women's Bleeding Disorders. The most common bleeding disorder for women is von Willebrand Disease (VWD).

Earlier this year the National Heart, Lung and Blood Institute (NHLBI), part of the National Institutes of Health (NIH) and the U.S. Department of Health and Human Services issued the first clinical guidelines in the United States for the diagnosis and management of VWD.

Here's the NHLBI press release.

And here's NHF's press release.

Baseball - Jack legging a triple

2008-05-09T14:44:00.007-05:00

Jack had a game last night and I remembered to bring the camera (and actually use it!).

Here's Jack hitting a legitimate double and taking third on the throwing error. But hey it's seven and eight-year-old machine pitch, so that's a triple. Jack has severe hemophilia A but that hasn't stopped him from enjoying his natural athletic ability. Ain't factor great!

With two games left in the season, Jack's team is 8-3-1 and in second place.

Genetics and Hemophilia

2008-05-08T14:43:00.008-05:00

Congress Sends Bush Anti-Genetic Discrimination Bill - Fox News

Redefining disease, genes and all - Andrew Pollack, International Herald Tribune

Medical science is constantly progressing, stretching the current limits and breaking new ground about what is known about the human body, its genetic makeup and what causes diseases.

The Pollack article is a fascinating glimpse into how advances in the human genome are changing how diseases are classified.

“The research is already starting to change nosology, as the field of disease classification is known. Seemingly dissimilar diseases are being lumped together. What were thought to be single diseases are being split into separate ailments. Just as they once mapped the human genome, scientists are trying to map the "diseasome," the collection of all diseases and the genes associated with them.”

Hemophilia has always been the classic case study of genetic mutations and has benefited from advances in genetic knowledge.

“Some of the earliest work has until now been with inherited diseases caused by mutations in a single gene. Diseases have been subdivided by the type of mutation. Hemophilia was divided into hemophilia A and B, caused by mutations in different genes for different clotting factors. And what was once considered a mild form of hemophilia was later identified as a variant of a different clotting disorder, von Willebrand disease, caused by mutations in a different gene and requiring a different clotting factor as treatment.”

So it is in this light that the Genetic Information Nondiscrimination Act carries even greater importance.

I’m not usually one for expansion of governmental power or governmental intrusion of this type but this is a good thing. I‘m not alone in this opinion. Separate versions of the bill passed the House 414-1 and the Senate 95-0 (Ron Paul the lone dissenter) and President Bush is expected to sign the final version.

It’s important not only for those with a genetic disorder but for those who’s only knock is they show a higher pre-disposition to more common ailments.

Ensuring genetic non-discrimination goes far to alleviating some insurance coverage and medical care concerns for our kids with bleeding disorders.

New VIIa product set for 2009 human clinical studies.

2008-05-06T12:09:00.004-05:00

Catalyst Biosciences, Inc. announced it intends to file an Investigational New Drug application and commence human clinical studies in 2009 for its new factor VIIa variant. Catalyst says CB 813 is, “…an improved, second-generation variant of human coagulation factor VIIa…for the treatment of acute bleeding in hemophilia patients.”

From the company’s press release:

“CB 813 is designed to substantially enhance clot-generating activity at the site of bleeding and therefore achieve clinical efficacy with fewer and lower doses than current therapy. In established hemophilia models of acute bleeding, CB 813 has demonstrated a significant improvement in potency compared with the marketed recombinant factor VIIa product, NovoSeven(R) and a competing, second-generation product, NN1731.”

Eventually one of these potential improvements will be realized and raise the bar for the rest of the industry. Here's hoping it's sooner than later.

Hemophilia fact-checking

2008-05-06T08:52:00.003-05:00

I saw this article a couple of days ago. It’s about a laid-off employee of Aloha Airlines with hemophilia and his struggles to maintain health insurance coverage. What caught my eye was a glaring mis-statement about hemophilia.

Chun has hemophilia; a bleeding disorder that means his blood does not clot. So he could bleed to death from even the smallest cut. (emphasis mine)

No, he couldn’t bleed to death from the smallest cut.

Part of any advocacy work is providing education about the particular issue of interest. It’s frustrating that loads and loads of work that goes into educating the public about hemophilia can be nullified by one sentence in one article where the research and fact-checking wasn’t done.

Because the bleeding disorders community is (thankfully) small getting free publicity in the form of news articles is extremely valuable. But misinformation like this does nothing to serve our greater goals.

McCain's Health-Care Vision

2008-05-01T23:54:00.005-05:00

Republican presidential hopeful, Sen. John McCain had an opinion piece Thursday at National Review Online outlining his vision for the future of the American Health-Care System.

“The problem is not that Americans don’t have fine doctors, medical technology, and treatments. American medicine is the envy of the world. The problem is not that most Americans lack adequate health insurance. The vast majority of Americans have private insurance, and our government spends many billions each year to provide even more. The biggest problem with the American health-care system is one of cost and access, and as a result tens of millions of individuals have no insurance.”

From my standpoint it hit the right notes:

Control of health care choices in the hands of the individuals.

“American families know quality when they see it, so their dollars should be in their hands. When families are informed about medical choices, they are more capable of making their own decisions, less likely to choose the most expensive and often unnecessary options, and are more satisfied with their choices.”

More choices in finding an insurance provider.

“Americans also need new choices beyond those offered in employment-based coverage. They want a reformed system so that wherever you go and wherever you work, your health plan goes with you.

… another option would be available: Every year, they would receive a tax credit directly, with the same cash value of the credits for employees in big companies, in a small business, or self-employed. You simply choose the insurance provider that suits you best.

Increased competition in the marketplace for your insurance business.

“Millions of Americans would be making their own health-care choices again. Insurance companies could no longer take your business for granted, offering narrow plans with escalating costs. It would help change the whole dynamic of the current system, putting individuals and families back in charge, and forcing companies to respond with better service at lower cost."

Competition through reform in the maddening array of states health-insurance rules.

“Right now, there is a different health-insurance market for every state. Each one has its own rules and restrictions, and often guarantees inadequate competition among insurance companies. Often these circumstances prevent the best companies, with the best plans and lowest prices, from making their product available to any American who wants it. We need to break down these barriers to competition, innovation and excellence, with the goal of establishing a national market to make the best practices and lowest prices available to every person in every state.”

Extremely important for the bleeding disorders community provisions to insure preexisting conditions within the marketplace framework.

“But we also need to ensure that those without prior group coverage and with preexisting conditions, who have the most difficulty in the individual market, have access to the high-quality coverage they need.”

“I will consult with the governors to solicit their ideas about a best practice model that states can follow — a Guaranteed Access Plan or GAP — and work with Congress, the governors, and industry to make sure that it is funded adequately and has the right incentives to reduce costs such as disease management, individual case management, and health and wellness programs.”

I don’t agree with Sen. McCain on all issues. But this is a sensible, workable approach to addressing the nation’s health-care needs without the leviathan of government run universal coverage. Universal coverage is well intentioned and admirable in principle but in practical terms would be a disaster for this country. The cost of health-care is already outpacing the ability of Americans to pay it. Involve the federal government (more than it already is) and can we seriously envision those costs going down. On a list of bloated, inefficient government programs health-care would be the biggest colossus of bloat and inefficiency. Rather than sending huge premium checks to insurers the American public would instead send their health-care dollars to the federal government in the form of vastly higher taxes.

One major aspect missing from the senator's proposals is some strong steps toward transparency of medical costs. How can the American public be savvy medical consumers if they can't compare costs because those costs are hidden? How hard is it to get the price of a unit of hemophilic factor out of a specialty pharmacy (negotiated contract price with your insurance carrier be damned).

Senator McCain’s proposal may need work and revisions but it is a sensible, responsible and comprehensive start.

Ffffsssttttt…splash

2008-04-30T00:16:00.002-05:00

That was the sound of the air going out of Barack Obama’s sails last week following his Pennsylvania primary defeat and then the sound of Rev. Jeremiah Wright being thrown under the keel today.

The presidential hopeful ship of Barack Obama sailed into Pennsylvania waters last week amid what could have been a political perfect storm. For Sen. Hillary Clinton that is. The Keystone state primary was set against the backdrop of the Rev. Wright controversy, renewed interest in the Senator’s ties to former Weather Underground member, William Ayers and Obama’s association with political fundraiser and wire fraud, bribery and extortion defendant Tony Rezko. Not to mention his own disparaging San Francisco comments about middle-class Midwesterners.

All of this didn’t so much fill Clinton’s sails as take the wind out of Obama’s. Pennsylvania’s more blue-collar electorate set up nicely for the former First Lady in the first place and add to it Obama’s recent woes and victory was all but ensured for Clinton.

In the end it may not matter. By throwing the Chicago pastor overboard today Obama more than likely will have righted his ship. Especially in the eyes and opinion of the fawning adoration of the nation’s media.

But let it be a cautionary tale. Let it serve as a reminder of how much we don’t know about the junior Senator from Illinois. People want him to be something different. People want to feel good about him. He is charismatic and witty and smart and people want him to succeed for so many reasons. But just wanting someone to be what you hope for doesn’t make it so.

Hope and change are universal ambitions. But with nothing behind them they are just words.

And remember he just disowned Rev. Wright a mere six weeks after saying he could no more disown his former pastor than he could his own grandmother. Look out grandma and keep your mouth shut.

Mirror - mirror

2008-04-28T12:00:00.004-05:00

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...

2008-04-28T11:53:00.002-05:00

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!

2008-04-17T08:00:00.005-05:00

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

2008-04-15T14:36:00.006-05:00

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

2008-04-14T13:27:00.005-05:00

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

2008-04-12T19:03:00.003-05:00

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

2008-04-10T08:45:00.005-05:00

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

2008-04-08T15:42:00.008-05:00

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

2008-04-07T14:30:00.006-05:00

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

2008-04-04T13:00:00.003-05:00

...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

2008-04-03T12:10:00.003-05:00

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

2008-04-02T07:44:00.008-05:00

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!

2008-03-31T08:28:00.009-05:00

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...

2008-03-23T11:30:00.003-05:00

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

Happy St. Patrick's Day

2008-03-17T10:40:00.005-05:00

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

2008-03-08T21:07:00.005-06:00

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

2008-03-05T09:41:00.003-06:00

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...

2008-03-04T13:44:00.004-06:00

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

2008-03-04T08:15:00.004-06:00

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

2008-03-03T17:20:00.006-06:00

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.

Global Warming Alert! And it tastes good!

2008-02-29T11:00:00.004-06:00

It's BBQ cooking time at the Houston Livestock Show and Rodeo. And they ain't cooking with no clean-burning gas. Wood baby! Wood smoke! Hundreds of pits fired up and smoking some of the best BBQ brisket, chicken and ribs in the world for three full days.

The World’s Championship Bar-B-Que Contest gets into full swing tonight and the the trail rides converge on Memorial Park today as the warm-up acts for the world’s largest livestock show.

WFB, 1925-2008; RIP

2008-02-28T00:28:00.005-06:00

I just finished watching Charlie Rose tonight. Charlie had a well-done retrospective on William F. Buckley's numerous appearances on the show and concluded with some heart-felt words and a final goodbye. I normally can't stand Charlie Rose. I find him interesting only for the quality of his guests. He has an annoying habit of interrupting his guests and finishing their thoughts for them. So I suppose it is telling of the great respect and deference for this particular guest that Charlie didn't employ his annoying habit very often to Bill Buckley (as if anyone could attempt to finish a Bill Buckley thought).

My first encounter with the work of William F. Buckley was through his Blackford Oakes novels, having read them on the recommendation of my brother, Tim. They were 'ripping good yarns' and I wanted to know more about this Buckley character. Low and behold my surprise to find he was the guy on "Firing Line" who necessitated the use of a dictionary to view and understand the show. At that youthful point in my life I didn't have much use for the high-brow debate of politics, philosophy, culture and religion that were often the subject of his show.

Despite that, as a high school senior or college freshman, National Review was my first-ever, paid-for-with-my-own-money magazine subscription. Through the years I've learned much more about the man and his life. A great deal has been said and will be written (much more eloquently than my me) about the man by those who knew him best. Especially over at National Review Online.

I have but one word, in its fullest meaning, to describe the man and his life.

Extraordinary.

If nothing else they were persistent...

2008-02-26T15:15:00.007-06:00

...The First WTC bombing @ 15.

Andrew C. McCarthy looks back for National Review Online. He should know, McCarthy is a former Assistant U.S. Attorney for the Southern District of New York. He lead the prosecution against the 'Blind Sheik' Omar Abdel Rahman and eleven others for the 1993 World Trade Center bombing and planning a series of attacks against other New York City landmarks.

Wyeth receives FDA license for new Factor VIII product

2008-02-21T14:10:00.002-06:00

The U.S. Food and Drug Administration today licensed a new treatment for hemophilia A called Xyntha Antihemophilic Factor (Recombinant) Plasma/Albumin Free. Xyntha is manufactured by Philadelphia-based Wyeth Pharmaceuticals Inc. Xyntha joins BeneFIX (hemophilia B) and ReFacto (hemophilia A) in Wyeth's antihemophilic lineup.

From the FDA release:

To make Xyntha, genes from Chinese Hamster Ovary cells (CHO) are modified to produce factor VIII. These CHO cells are free from known infectious agents, and Xyntha undergoes an additional process of viral inactivation. Also, the culture in which the cells are grown is free of any human or animal material.
"This product provides an additional treatment option for hemophilia A patients. This recombinant Factor VIII is produced without additives from human or animal material, which further minimizes any risk of infection from the product," said Jesse Goodman, M.D., M.P.H., director of FDA’s Center for Biologics Evaluation and Research.

Transplanted liver cells show promise for Hemophilia Cure

2008-02-19T14:54:00.003-06:00

I've been late in linking to this important and hopeful bit of news.

The meat of the find:

In the study, Gupta's team worked with a mouse model of hemophilia. They transplanted healthy liver endothelial cells into the livers of these mice, according to the report in the Feb. 14 online issue of the Journal of Clinical Investigation.

Three months after transplanting the cells, the number of healthy cells had increased and were producing factor VIII in amounts sufficient to cure their hemophilia, the researchers found.

Given these results, researchers can start to focus on where factor VIII is made in the human body and how things can go wrong with its production, Gupta said. (emphasis mine)

It’s the Lenten, Ramadan, ah, lent…what?

2008-02-13T22:19:00.003-06:00

Its good to see our multiculturalist brethren in Europe are doing such a good job keeping the faith.

Dutch Catholics want to rename Lent as Ramadan.

The Catholic charity Vastenaktie, which holds collections for the Third World all across the Netherlands during Lent, said the liturgical season leading up to Easter needed a more relevant reference point.

"The image of the Catholic Lent must be polished. The fact that we use a Muslim term is related to the fact that Ramadan is a better-known concept among young people than Lent," said Vastenaktie Director, Martin Van der Kuil, told the Daily Telegraph.

And who said fatwas against cartoonists and the murder of a film director was bad publicity.

In related crazy Euro-Christian news, the Archbishop of Canterbury, Rowan Williams is nuts. And besides that thinks Britain should adopt aspects of sharia law.

The Archbishop provoked the row by saying Britain had to "face up to the fact" that some citizens did not relate to this country's legal system and argued that officially sanctioning sharia law would improve community relations.

If by 'community relations' they mean stonings or 40 lashes or religious police grabbing people in Starbucks then sure, o.k.

And to think this book was scoffed at.