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’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!