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.
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!