Congenital Myasthenic Syndrome - Announcement

Hey everyone, well this Thursday is Luke's Rockstar moment!

A few months ago the Children's Neurology Clinic (downtown Dallas) approached us and asked if Luke could be presented at this Neurologist Conference held at Scottish Rite Hospital this Thursday Feb. 21st.

Our primary Neurologist Susan Iannaccone has explained to us that Luke is very, very rare. His genetic disorder is 1 in 2 million. This has become increasingly evident to me as I've been contacted through Luke's CMS BLOG by parents in Greece, France, UK, Ireland, Turkey, and the domestic US. It's been amazing. Of course...it's been so great to build community with these parents as I hope that Luke someday can chat with their kiddo's.

With this said,.....pray for our Lukester to do great! They are putting him literally on a podium and approx. 200 Neurologist will be staring at him and asking tons of questions. We are very excited as we've been told we can ask questions back!! Whooohooo! Talk about a great resource. I've agreed to do this as I've said before....WHEN there is a cure for my Luke...I want to be the first to know. I will make sure all the Neuro's have a copy of Luke's blog information.

The Chief resident has already given me permission to do this! Whoohooo again!

So...I created a little banner of my baby! I'm seriously thinking of letting him wear the shirt that my little brother got him reading "I still live with my parents". So funny. I thought that the Neuro's would get a kick out of that.

Ok...I plan to video and take pictures of this event. If anyone with CMS kids are reading this..please, please email me your questions you want me to ask while we are there:andreas7@cebridge.net

Hugs!!

A