Tuesday, May 11, 2010

A Day In The Life or Bingo Anyone?

I read the news today oh boy
About a lucky man who made the grade
And though the news was rather sad
Well I just had to laugh

Those who have joined the Crowleys at the annual UH Elementary School Pizza Bingo Night can verify that I am not known for good luck.  This goes for standard bingo, four corners, blackout, and that dastardly little game where the worst player stands tall until his number is called and he drops to his chair in shame.  Yes, even here victory slides through my fingers as I watch some third grader bolt up to the stage immersed in cheers from the crowd.  This is unlike some of my friends who attend year after year, even after their kids move onto middle school, and still find a way to win that gumball machine, tickets to the Reading Phillies or the coveted lunch with Mr. Davis.

Now that I have exposed my shame to the worldwide web, I will tell you that winning is just a matter of perspective.  You see, I read the news today and exclaimed "oh boy" throughout the house when I saw we made the top ten.  Well, more precisely the top nine as Forbes Magazine published a story titled "The World's Most Expensive Drugs".  Fortunately, my good friends at Genzyme nabbed four spots with Fabrazyme, Cerezyme, Aldurazyme and our own Myozyme, all costing over $200,000 per year.


In my excitement I picked up the phone to call all those pizza bingo winners when I realized ... wait ... this isn't that Bowling Palace prize I have always desired ... I have to pay for Myozyme.  Maybe my luck isn't so great after all, until... my friends at CHOP sent me a different story.


I read the news today oh boy
About a lucky man who made the grade

This story is published in The New England Journal of Medicine and is titled "A Randomized Study of Alglucosidase Alfa in Late-Onset Pompe's Disease".  I read this news, exclaimed "oh boy" and will do so for many days, months, and years.  You see, until now, most of the published results for Myozyme were based on testing with infants, specifically those facing the infantile form of Pompe.  This study focused on the use of Myozyme with adult onset patients which most closely resemble the diagnosis of our girls.

The report shows that the study population, treated with alglucosidase alfa (Myozyme) saw improved walking distance and stabilization of pulmonary function over an 18-month period as compared to those who did not receive the drug.  So, in short, they proved that Myozyme will continue to work for our girls and all the other adults fighting Pompe now and into the future.  Good news indeed!

For those who are interested in catching up on their scientific reading I have included the link to the study here: http://content.nejm.org/cgi/content/abstract/362/15/1396

While this news may not be as exciting to some as rushing to the stage and holding that shiny new gumball machine in the air, that's OK.  I may never win standard bingo or even four corners, but will be placing this magical bingo in my shirt pocket, close to our family's heart.  After all, winning is just a matter of perspective.

Game on!

Credit to: The Beatles, "A Day In The Life"


  1. Thanks for this information Mr. Crowley! Keep fighting girls!
    Miss D.

  2. Gumballs lose their flavor after a few minutes. Sounds like Myozyme is the REAL, authentic prize here!! From my perspective, you have been on a "win streak" since you and Donna met.The icing on your love story has been your 3 amazing kids...winners all!!! XOXOXO

  3. Thanks Matt! You continue to be my best source of information!

  4. Oh Boy! Oh Girls!! Lucky indeed!!

  5. mmmmmm....


    I like where they are headed.

  6. I have always liked the word "indeed"

    I hope you will continue to play bingo and be "Into it". You bring a certain level of excitement to the game. In other words, I hope you do not lose your bingo balls.

  7. I saw the girls today, Oh boy.
    You are a lucky man who made the grade.

    They are warrior princesses.

    It is an elite club, with not many members. They are in.

  8. I know you haven't won yet in Bingo. The key is to keep playing.

  9. "Everything we hear is an opinion, not a fact. Everything we see is a perspective, not the truth.”
    Marcus Aurelius

  10. “Laugh at yourself and at life. Not in the spirit of derision or whining self-pity, but as a remedy, a miracle drug, that will ease your pain, cure your depression, and help you to put in perspective that seemingly terrible defeat and worry with laughter at your predicaments, thus freeing your mind to think clearly toward the solution that is certain to come. Never take yourself too seriously.”
    Og Mandino