Last Thursday my alarm went off at 3am – yes 3am. I got myself up and drove to the airport because I had an early morning flight to Boston. I was invited to be a guest patient speaker at Genzyme’s Annual Marketing Meeting. So even though it required a 3am alarm, I was thrilled. I was so excited to be heading to the home of where my life saving enzyme replacement therapy was developed and to meet even more of the wonderful people at Genzyme.
It was a quick two day adventure. They packed a lot of activities in those two days and even managed to get me in and out of Boston between serious snowfalls.
After being picked up at the airport I was whisked away to Genzyme Headquarters for a tour. I was met by Kathleen Coolidge from Patient Advocacy who spent the entire day with me. An employee volunteer gave me the grand tour of the building – which is beautiful and amazing in addition to being green. Lots of natural light, water features, live plants – after working in a windowless basement under florescent lights for years, I’m not ashamed to say I would love to work in that building.
It was then off to the Allston plant where they manufacture two enzyme therapies and where Myozyme was created. I had lunch with several Genzyme employees who are currently training for the Boston Marathon. Each of the runners is paired with a patient who they will “run” for to help raise awareness for rare diseases. Angela DeLucco from Employment is running for me. I think is so amazing that these employees are out there on their own time, pushing their bodies to limit, running for those of us who can’t. If you’re in Boston on April 11, 2011 be sure to cheer them on!
After lunch I was treated to a tour of the facility, where they actually make the drugs. It really is a complex and fascinating system and it takes a long time from start to finish. It is pretty unbelievable to stand next the huge containers used to make the drugs and imagine when all is said and done, I’m hooked up to a little IV bag at the end. It really makes you appreciate the long journey the meds make before reaching the patient.
After my tour it was time to give a speech to the Allston workers. I was scheduled to speak and share my story during a town hall event. There was an incredible turn out, I must say, I was a little worried I would be addressing an empty room – but it ended up being standing room only! I took them through, what my local rep Steve has deemed, my diagnostic odyssey. From my medical history, to my first symptoms, to my misdiagnosis, to how bad things got for me physically, to starting Lumizyme and how it has saved and improved my life. Everyone was so engaged and asked such great questions. I am very grateful to everyone for the opportunity to meet with these folks, but the most touching moment was when a man from the audience took the mic to make a comment, something to the effect of, “I just work in research, I’m not out there saving lives, but I’m just so grateful that you would come and speak to us, that I had the opportunity to hear how well you’re doing.” I made sure to not only thank him for his kind words, but to remind him that he is part of a team and people depend on him to do his job, therefore it is important.
After the Q&A session was complete it was time to go check in at the hotel. I unpacked and took a quick power nap because it was then time to meet some more Genzyme folks in the lobby before heading to dinner. I had a nice quiet dinner with Kathleen, Angela, and Maureen Stellwag from US Marketing. Maureen had reached out to me last month and invited me to
the meeting, so it was nice to have some time to get to know her. She is a Disney fan on top of working for Genzyme, so clearly she is an awesome person! After dinner, it started lightly snowing, not enough to be a problem or even make it really cold, it was just pretty. It had been a long day so I pretty much collapsed when we got back to the hotel, luckily I didn’t have to be downstairs to give my presentation at the meeting until 10am – thank you Maureen, I needed the sleep.
Maureen introduced me and played the video clip from Ivanhoe broadcasting and then I shared my story with another roomful of Genzyme employees. Again, I was greeted with earnest attention and genuine interest followed by a Q&A session. Everyone was so kind and complimentary, but honestly – it was my pleasure. After all, without them I wouldn’t have been able to literally stand there and speak for that long. My legs and respiratory system would have been too weak to complete that task without my Lumizyme treatments.
One of the questions I was asked I could use some input on answering. I was asked what could Genzyme do better for their patients? The only thing I could come up with is having them develop a better way for the whole patient community to interact and support one another as there are a bunch of fragmented groups out there. But if Genzyme created a place, because let’s face it, no matter where you are in the world, if your life has been touched by Pompe, you’re hopefully in contact with Genzyme.
I had a difficult time coming up with anything else because my immediate team, as well as anyone I’ve ever been in contact with has been beyond amazing. However, I have heard that not everyone is as lucky as I am, so I’d like to know what you think.
What can Genzyme do to improve patient relations? You can leave me a comment and I will email you back privately, and if you’d like me to keep your suggestions confidential I will. Any organization really does want feedback, especially about areas where they can improve. So if something has been on your mind, please let me know and I’ll deliver this information to Genzyme.
What a wonderful blog about visiting Genzyme! Thank you for the photos and the wonderful description of your experience.
I agree, there are so many fragmented groups of pompe people out here. How aboug Genzyme creating a group via their website where those of us in the pompe community can go and “talk”. Although they would need to get the message out there that this avenue was available. This could be done via a central register where pompe patients could be registered and hopefully give their permission to be contacted and advised of this group?
And, while i know it is the responsibility of our individual governments to provide the funding for treatment of pompe (let’s face it, it is totally unaffordable to the average person to buy)…there are those of us who are unfortunate enough to live in countries that don’t fund it, would Genzyme consider carrying on with their scheme where they can provide those of us with pompe the medication needed to fight this awful disease?
Forever frustrated, and hopeful 🙂
Thanks for the feedback Allyson, I will pass this on.
What an awesome trip! You’re an incredible community spokesperson Monique. I can imagine that this was quite a big deal for some of the staff there. It’s pretty cool to see how your hard work benefits other people and I bet they really appreciated that. Good thing you found your gloves!!
My hands were very happy I found my gloves!
Thanks for sharing your experience at Genzyme. Leslie and Paulomi from Genzyme both sent me the link about your blog. They said they thought of me when they heard your story. I have had the positive DBS and now waiting on the DNA genetic analysis. I am so anxious to get Pompe confirmed so I can start treatment. I see Dr. Kishnani at Duke next month.
Thanks again for sharing. 🙂
Waiting for the final confirmation seems like forever, but as I imagine your journey to this point has been long, the tests will actually come back very quickly. Pompe changes your life, but the treatment improves (and of course saves) your life. I wish you the best, please keep me posted!
I just took a short trip down memory lane. (Blog of October 2007). For those of you who may be new to this blog or would just like a refresher on this journey, take a look. I found it amazing how far Monique has come. From just hoping for a diagnosis to becoming a spokesperson. My niece – amazing!
Crazy journey huh? I’m lucky to have an amazing aunt like you who has stuck with me from the beginning, through brush fires, evacuations, and blizzards!,
i have come to you by way of http://runningforrarediseases.org/ and i am so pleased to meet you! it seems life has tied us together in many ways. first, we share pompes. i can see we are both proactive and enthusiastic in our approach to daily living. we also have a compelling desire to help pave the way to a brighter future for all who are challenged with pompes. we are being honored by a genzyme employee who is running in the boston marathon for the same compelling reason! and we both have a blog!
i am thrilled to have this chance to know you and work toward our mutual goals.
i am off to explore your blog monique. i hope you will visit mine where i have a focus on art and the way the creative process allows for wholeness and beauty in spite of the bodies we inhabit.
It is nice to ‘meet’ you – I am a an adult age 27 living another very rare lysosomal disease MPS I (mucopolysaccharidoses) Hurler Scheie syndrome and it is always nice to come across some one who is active in their life despite a life-threatening disorder and who feels they can help spread awareness about what that disorder is. I also receive an ERT infusion drug through genzyme (genzyme/biomarin partnership) and have been blessed to work with the marketing dept at genzyme over the past 4 years through speaking at their center in boston and at genzyme sponsored patient meetings and feel this is a company that really cares. Through other work I do for pain awareness I work with other pharmaceutical companies and none comes close to the patient focus genzyme has!
I hope you are well and I will follow your blog deom time to time.
Thank you for the support Erica! You keep fighting the good fight too!