Wednesday, May 26, 2010

Great News from Boston, Even for a LA Sports Fan

Growing up a loyal sports fan in the Los Angeles area, I've developed an immediate smirk each time I hear about the town Boston.  Sure the band Boston was great (I know your humming "More Than a Feeling" right now), but how can this fan support a town whose teams battle my Lakers and Angels year in and year out?  There's no doubt these guys have talent, but rooting for anything from that town is like a Philadelphia Flyers fan rooting for the Chicago Blackhawks in the Stanley Cup.  Happening?  No.

While it pains me to write this, I must admit the tide is changing.  Now you won't see me wearing a Red Sox hat anytime soon (read never) or rooting against Kobe in the NBA Finals, but you will see the Crowleys standing up in applause for our new Boston friends for the following...

Genzyme Receives FDA Approval for Lumizyme for Pompe Disease

Lumizyme is the first treatment approved in the US specifically to treat patients with late-onset Pompe disease.  This includes all patients eight years and older.  While the girls were currently receiving Myozyme, this was only guaranteed until they reached 18, as the product is primarily for infants due to the limited supply of the drug.  Through this approval, Genzyme has secured their long term treatment supply and opened the door for many adult onset Pompe patients who were not able to secure treatment previously.

Here's a link to the press release if you wish to have more information:

On the home front, the girls had their third Wacky Wednesday infusion today at CHOP and everything went well.  They began on time and made it home with enough time to work on their tans and enjoy the Slip-n-Slide. Not bad!

So three cheers to Genzyme and to Boston as you've made this LA fan very happy.



  1. Awesome news Crowleys! Congratulations!!!
    The Sharps

  2. The British are coming !
    Beat LA! Beat LA !

    Now this.

    So far three good things have come from Boston.

  3. Please come to Boston. She said no.
    Won't you come home to me?

    I think "She" had it right.

  4. Interesting and informative - as always.

    So, will the girls be transistioned to Lumizyme later this summer like those of us on ATAP? Or will they stay on Myozyme until they are 18?

  5. “In Boston they ask, how much does he know? In New York, how much is he worth? In Philadelphia, who were his parents?”
    Mark Twain

  6. …with apologies to Matt for using up one of the songs (or in this case, rather “audio information”) that I am sure he would have gotten to with time, but I did my best to pick an obscure one.

    With the situation
    They are standing still
    The plan, the telegram...
    A man without terrors from beard to false
    As the headmaster reported to my son
    He really can try, as they do, to find function...
    Tell what he was saying, and his voice was low and his hive high,
    And his eyes were low...
    It was on fire and his glasses were the same
    This thing know if it was tinted,
    But you know it isn't
    To me it is...
    Number nine, number nine, number nine, number nine

    Some things like this song “Revolution Number 9” just seem to make no sense at all. In fact, although I am a very avid Beatles fan, I truly don’t know why this song was recorded at all. It just makes no sense. When I first heard about Maddie having Pompe Disease, I felt the same way I feel when I listen to this song, confused. After all, how could it be that such an effervescent young girl would have anything wrong with her body at all, let alone something as obscure as this? Then for Emma to be diagnosed with it too was more than befuddling to my nimble brain. These are neighborhood kids after all. We live in our perfect safe cocoon and aside from the odd sniffle, or flu or dare I say outbreak of lice every once in a while, nothing of physical significance happens to us, let alone our kids. Just like the Beatles Revolution Number 9 this just makes no sense at all.

    Did you ever listen to the Beatles Revolution Number 9 backwards? No seriously, back in the day when we used to listen to things called albums on turntables, you could actually manually spin the record backwards and track the needle through the song in reverse. If you ever tried it on that particular number, you would find that cross-tracked over the babble of the song, was a story that was actually understandable. Oh, don’t get me wrong, it was still a bizarre story (a John Lennon/Yoko Ono phase I guess), but there was a story nonetheless that made sense.

    I don’t think I will ever understand why Maddie and Emma have this disease. Oh sure there is the medical side to thing with this gene connecting to that gene and so on and so fourth, but I mean why in the grander scheme. I will never understand why, of all of the families in this world why this family was chosen for this. Hopefully though, some good things will come out of this that will make sense (without playing them backwards). Hopefully, this fantastic family will see the people around them care in a way that they never even imagined people could care for them. A caring that was always there, but lost in the shuffle of every day life. Hopefully theses girls will see friends act with maturity and warmth towards them for their entire lives. Hopefully, the Crowley family can continue spread their constant brand of caring to other families going through the same thing as they have already begun to do and make a real difference in those lives.

    And in the end (not to be confused with the song…Matt, I will leave that one for you), hopefully, this aspect of your lives will fade to normalcy, and wonderful things will follow for all of you.