Genzyme’s Patient Advisory Meeting #1


Last week I found myself braving the fierce weather in Boston again – well, ok it was fierce for this Florida girl. Luckily, I still had my limited supply of winter gear handy from my recent trip to Europe (more on that adventure later). I had the pleasure of attending a Patient Advisory Meeting with fellow Pompe patients, parents, and Genzyme employees.


I love meeting up with others in the Pompe community and Genzyme always treats us very well. So while all bundled up and fighting a cold I caught in Europe, I spent the better part of Friday discussing the needs of the patient community and how Genzyme could help us with an amazing group of people, who I look forward to working with.

I would like to thank everyone who submitted information to me to take to this meeting, and rest assured I brought all of your concerns to the table and they are being addressed. This first meeting was really about getting everything “out there” if you will, and formulating a basic strategy on how to deal with the most common concerns – which seemed to center around improving communication and increasing/improving ways for patients to connect to one another.

As we move forward with things I will update you and I welcome your continued input and interest. This meeting was only the first step in a long journey which I believe will improve and strengthen our community.

Here we are enjoying dinner with our Boston tour guide Amy, who was kind enough to take the photo and bring us to this delightful Lebanese restaurant.

On a personal note, I took advantage of the “warmer” ahem, Boston weather and took a few extra days to site see with my best friend Vanessa. I have known Vanessa since we were 4 years old and she is an amazing supporter not only to me, but to the entire Pompe community. Whenever I have called for letter writing she is always the first to submit to the cause – and she is a fierce letter writer!

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