Busy Times – Quick Update & Photos


I know, I know – I have lots to update you on, but very little time to do it. I will get around to posting everything as soon as time permits.

In the meantime, here is a quick update about one event this past week:

On Tuesday, Ramin and Darryl from Ivanhoe Broadcast News met me at the fitness center to interview me and get some footage of my physical therapy work. They also interviewed Dr. Byrne because they are putting together a piece on Pompe that will be sent to their 250 affiliates nationwide in early October. I’ll keep you posted about when and where it will air, but for now – here are some photos from the shoot.


  1. good morning!
    i just discovered you……and promise to return after i complete my morning treadmill.
    i too am living a life in the body of a pompe patient.
    i too have a blog which serves as an amazing tool in a creative approach to this live we share.
    so glad to meet you!
    so happy you have found your way to treatment.

    1. It is always nice to meet another Pompe patient (there are so few of us)* – someone, who really understands how our bodies are trying to make life hard on us. Keep up the good fight and hope to hear from you soon!

      *In a way it is good there are so few of us because I wouldn’t wish Pompe on anyone, on the other hand because there are so few of us information can be hard to find.


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