Hiatus (hayh-ey-tuhs)

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

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...

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

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

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

I'm announcing a name change

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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).

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)

PEP Program Article

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

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

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...

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

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

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

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

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

Plasma provider consolidation

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?

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

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

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

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.

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?

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 !!

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

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.