My Dad and I On Genzyme’s 2006 Annual Report

The title says it all. I wrote about the “photo shoot”: that I was on a few months back and now it’s finally published. The gruelling 7 hour photo shoot (well ok, ok, it wasn’t gruelling and 2 hours of that were spent having lunch) has finally paid off. Genzyme recently published its “2006 Annual Report”:

I knew it was destined to come out some time April. I checked Genzyme’s website recently and the annual report was there already. I eagerly downloaded the “PDF version”: and looked for the photo. I saw it moments after, in all of its splendid black and white glory. Ok, enough drama and exaggeration. To be fair it was a great photo.

! (Photo that came out in Genzyme's 2006 Annual Report)!

The final photo was that of my dad and I. It was taken in Tiendesitas, a local shopping area. It’s an open type of shopping area. My dad was pushing me down a walkway that was lined with stores selling native art and crafts. If I’m not mistaken I was looking at a drum made by an indigenous tribe.

I feel really honored to have been chosen by Genzyme to represent Pompe patients and Myozyme users in their Annual Report. The past year has truly been a blessing since I am able to receive Myozyme and representing patients in the annual report means a lot to me.

Does this mean the start of my modelling career?….. Nah… I don’t think so…

8 Replies to “My Dad and I On Genzyme’s 2006 Annual Report”

  1. Juan…GREAT picture & I think it is wholly appropriate for Genzyme to choose a young man as inspirational, positive & humble as yourself. I visit your website about once a week to see how you’re doing. I have an 11 year old son who was diagnosed with Pompe in Jan, 2007. It took 2 years but we are so happy to have a diagnosis AND a treatment. Zack is currently undergoing baseline testing and will likely have his first Myozyme treatment in May. You remind me a bit of my son and here’s why….he’s 1/2 Asian, handsome (spoken like a true mom!), funny, thoughtful, appreciative and doesn’t let his disease define him. He goes to a public school and maintains a 3.5 GPA, likes video games and hanging out with his friends. He walks on his own and is pretty independent when it comes to his breathing treatments, bi-pap, medications etc. We feel incredibly blessed to have such an amazing child. I love the way you talk about your family. They sound like wonderful people. Take care & email us back if you would like!

    Sabrina (Zack’s proud mom)

  2. beautiful photo of you and your dad! It really made me smile. It’s so sweet that you both looked very happy. Thank you very much for sharing this wonderful photo with us. I have read your previous blog about your health, I was worried, of course. I’ll continue to do my prayers for you, my friend. At least, your family and friends (and God, of course) never stop loving you. I’ll give you more sweet hugs, my friend. May God watch over you and your blessed family and friends.


  3. As Tyra Banks would say… That was fierce! Hehe. :p

    Kudos for being the face of the annual report. Hopefully a lot of investors see this and put money into Genzyme.

  4. Juan – Just today I came across your blog. I’m truly inspired by you, and what you’re doing for others with LSDs. Some background on me – I work for Genzyme (and have for many years), and am involved in the manufacture of Cerezyme -another LSD which treats Gaucher’s Disease. Reading your blog has provided me with a great sense of the struggles you’ve faced in your life. Your outlook on life is motivating. Its great to hear that you haven’t let your illness stop you from attaining success in your life. I look forward to continuing to hear about your success with Myozyme, and just wanted to let you know that you and your family will be in my thoughts and prayers.

  5. Dear Juan,

    The photo is truly fitting! The smile of you and your father express a true sense of HOPE. Congrats…

    As for me….last week was a tough one as my mother passed away due to complications from a fall (she had Pick’s disease AND Rheumatoid Arthritis). She fell and the incident caused her to cardiac arrest with further complications of aspiration into the lung…this caused pneumonia which ultimately caused her death…

    She will be truly missed and I’m glad that I was able to have been in Ottawa and only 1 hour away from both parents before this tradgedy. I will now focus my efforts on my father and ensure he is well looked after.

    As for my new job…it is different. I’m now back with Merck and doing government work. As you might be aware it is hard for Pompe patients, for example., to get their meds covered here in Canada…even if we are such a wealthy country. Therefore, the work I’m doing will hopefully help this situation (even though I won’t be focusnig my efforts no Myozyme…Merck works on tyring to change the system not just for one drug).

    Anyway, I was thinking of you today and wanted to say hello.

    We will keep in touch and should link up soon vie ichat.



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