August Update



August has just begun, and already it is shaping up to be very interesting.

Say Cheese!
On Tuesday, Genzyme sent an amazing photographer, Chris Kirzeder to take photos of me. Yes, me. Why? Genzyme will use the photos in materials relating to Lumizyme such as brochures and other educational publications. At least that is how I understand it. I shall keep you posted.

New “I CAN”

During the photo shoot I made a discovery that confirms to me that I am getting stronger, bit by bit. We took some photos in the pool and I was able to climb in and out of the pool without any assistance climbing the stairs! That is something that I couldn’t do only a month ago. I confirmed my new found stair climbing ability today at the therapy pool in the hospital – I CAN now climb out of that pool with only having to use one hand on the railing. Improvement, slow and steady improvement!


Tomorrow, I will be doing a live radio interview for Insider’s Health, on at 3:30pm (EST).The program will air nationally and a podcast will also be available. They want to know about little ol’ me and Pompe. More Pompe awareness!

Change of Location

I will no longer be receiving my infusions at the University of Florida. With the ATAP program coming to an end on August 20th, “regular” infusion sites were set up. Initially UF was not going to be infusing adults with Lumizyme, so the paperwork went through to have my infusions conducted at one of these new sites. After my insurance had approved the new site, I was told UF had worked something out in order to keep infusing adults. Since my paperwork had already been put in motion, I decided to give this new place a try. After all, I’ll never know if this new location will be better for me geographically unless I give it a go right? If I am unhappy at the new infusion center, I’ll be going back to UF. So, on Monday, my “regular” infusion will take place in a new location with a new team of health care professionals. I also decided to move forward with the change of venues because I feel that this is an opportunity to help educate more medical professionals about Pompe. Dr. Byrne and Lindsay Falk at UF will still be part of my health care team, and since Dr. Byrne is such a rock star in the Pompe world, that is very important to me.

September is shaping up to be interesting too… but for that you’ll have to wait.


  1. Wow you’re gonna be famous! Mind if i start name dropping? lol. Hope all goes well for you at the new venue.

    How long have you been on Lumizyme for? I couldn’t get out of a pool at all. I’m SO praying i can get my hands on Lumizyme! Do you think Dr Byrne would have any clout with the powers that be here in NZ?

    1. Allyson:

      I have only had 10 infusions and have been lucky enough to see and feel results so soon and without having any sort of bad reaction to the medication. I also stick to a pretty strict diet and exercise program and I use an electro-muscle stimulator.

      I figure the more times I talk about Pompe and the treatment to the media or whoever will listen is good for all of us. And I hope you can get on Lumizyme soon too – we’ll celebrate across the Internet on that day!

      Dr. Byrne could certainly add to the “credibility” factor that Lumizyme works and knowing how involved he is with the medical community, he could possibly have contacts in NZ.

  2. I absolutely agree, the more pompe is talked about everywhere the better!

    Can you tell me about your diet and exercise program? I’m trying to get to see a dietician, but there seems to be a big lack of them in the town i live in. I might have to travel to see one, but that’s ok! I love driving, especially when i’m on my own as i can turn up the mp3 player and sing at the top of my voice. My kids always tell me to shut up because i can’t sing. I tell them they just don’t appreciate talent when they hear it lol.

    I wonder if you could ask Dr. Byrne if he has contacts in NZ?

  3. Just listened to the Podcasts of you and Dr. Byrne. You both did a fantastic job! I’m so glad to hear that you continue to see improvement however small. As you said in you interview – baby steps. Just remember that all those “baby steps” could turn into a marthon. Well, maybe not.:(

    I look forward to all of your posts showing up in my e-mail. Remember, I am here to listen (almost) whenever.

    Love ya,

    Aunti Jan

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