Media Update and More

  

 

Just chilling at Epcot with my pal Barry - Dr. Barry Bryne that is! We had to wear shades so he wouldn’t get mobbed by his fans!

A few months ago producers from Ivanhoe Broadcasting paid me a visit at Celebration Hospital‘s Fitness Centre and Day Spa (one of my main stomping grounds for battling Pompe). They also interviewed Dr. Byrne about his role in our rare disease world. In case you didn’t know, Dr. Bryne is one of the leading Pompe researchers in the world and I consider myself one of the luckiest rare disease patients in the world to be under his care. The segment is scheduled to air on over 200 television stations across the country in January. I don’t know when or where it will air, but if you see or hear an announcement for “Cracking the Code: Pompe Disease” then that’s the one.

You can view the segment online by CLICKING HERE. You’ll have to sit through the segment on Tai Chi first, so don‘t think you‘ve landed on the wrong page. And be sure to pass the link on so we can continue to raise awareness!

I’ve also updated the page “M.E.G. & the Media” with this link as well as a new article from UF.

I’m off to Boston next week to meet with the wonderful folks at Genzyme. I’m going to give a speech at their annual marketing meeting. I’m excited to see the facility and meet with all the dedicated people who are making our lives better. I’ll have photos and updates soon. Wish me luck and warm(er) weather!

Thank you everyone for your continued support and interest!

5 comments

  1. Thanks for visiting us in Allston yesterday (1/19/11)! Seeing you in person and hearing how you have done so well since using our product is a real thrill for all of us here.

    1. Ken,
      Thank you! I really enjoyed my visit and loved meeting everyone. You are a real special group of people, please keep up the amazing work you do! I’m back home now, safe and sound in Florida so I even missed the heavy snow fall, but I would have stayed longer if I could because I could chat with anywhere there for hours, everyone was so warm and welcoming.

      Monique

  2. Monique-
    I just watched the clip about Pompe.The Pompe community is certainly blessed to have you. Your willingness to share your experience and knowledge is wonderful. Thanks for all you do!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s