Month: March 2011

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!

Coming Soon…


With my “Pompe Peeps” in London, March 2011. From left to right, me, Sam, Ben, Ashley. We had authentic Dim Sum in Chinatown - including chicken feet that Ben ordered and actually ate!

That’s right, this is another quick update and preview of information to come because my schedule is jam packed right now. I just returned from a trip to Europe with my friends Lonnie and Traci so there will be some Accessible Travel postings. While on my European adventure, I had the pleasure of meeting up with fellow Pompe warriors Sam, Ben, and Ashley in London as well as visiting the hospital in Amsterdam where Dr. Johannes Pompe worked. I have my 27th infusion tomorrow and then I will attend a patient meeting in the evening. On Thursday I fly to Boston to meet with Genzyme’s Patient Advisory Board and I will spend a few extra days exploring Boston with my best friend.

Other than being extremely exhausted, I am doing well and still fighting the good fight.

Genzyme asks: How are we doing?


In a couple of weeks, I will head back to Boston to participate in a Patient Advisory Meeting at Genzyme. They want to know how they are doing and how they can improve their patient relations among other things.

I have spoken with a few Pompe patients about their relationship with Genzyme and feelings range from, “They are unbelievably fantastic” to “eh, I’m not impressed.” What can Genzyme do to help you and your family as you navigate through the complicated world of Pompe?

I have heard from some patients that they do not feel connected to Genzyme, that their local representatives do not contact them enough. I have also heard that Genzyme is fantastic, that they cannot seem to do enough for patients and that you wouldn’t change a thing. But, there is always room for improvement and Genzyme is striving to be the best, and for that to happen they need to know what you think.

The one universal concern or request I have come across is the need for a better way for patients to find and communicate with one another. Additionally, my friend Karen had an excellent suggestion for developing a mentorship type program. Where those who are newly diagnosed are paired up with a more “experienced” patient. The common theme I see emerging here, is to help patients connect and not feel so alone.

Please let me know what you think. You can leave a comment anonymously, if you want. You can even ask me not to publish your comment as I know some of you are hesitant to “criticize” the company that provides your life saving treatment. But in order for them to be the best, they need to know what they are doing right and what they are not.

I fly to Boston on March 24, so please send me your ideas and comments before then.