Saturday, November 8, 2008

More Israel

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

Tuesday, October 28, 2008

Greetings from Israel

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

Friday, October 17, 2008

I'm announcing a name change

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

Wednesday, October 15, 2008

Injured student’s suit against Tecumseh schools dismissed

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

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.

Tuesday, October 7, 2008

New Orleans PEP Train the Trainers

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.

Thursday, October 2, 2008

PEP Train the Trainers

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.

Wednesday, October 1, 2008

We're Back!

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.

Wednesday, September 17, 2008

Redbleed blackout

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.

Friday, September 12, 2008

108 years later - Galveston

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.

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

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.

Thursday, September 11, 2008

9-11-2001




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.

Tuesday, September 9, 2008

Typical Saturday for a kid with Hemophilia?

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.

Monday, September 8, 2008

What an Event!

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.

Tuesday, September 2, 2008

We interrupt...

...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.

Friday, August 29, 2008

Poorly researched hemophilia article leaves wrong impression

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 !

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.

Thursday, August 28, 2008

I have a dream...Congratulations Sen. Obama












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).

Wednesday, August 27, 2008

Local article on Hemophilia and the Hemophilia Walk

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)