Reserve and Register!
Just a couple more months until many of us will be meeting (and in some cases meeting again!) in beautiful Bloomington, Minneapolis! I don't know about you, but the last weekend in July just can't get here soon enough for me! For those of you who are coming--or even hoping to come--remember that you can cancel your hotel reservations up to 72 hours in advance if necessary, so go ahead and reserve your hotel rooms
before they run out! We're very excited to see the rooms filling up and the incoming registrations. If you haven't registered yet, please do so here
. That way we can have a better idea of how to meet your needs!
Speaker Highlight: Sabine de Chastonay
You may have seen the recent announcement in the MDA's Quest magazine about the "MTM Phone-Based 'Event' Study."
This is a study that involves monthly interviews over the period of a year to gain deeper insight into the changes in respiratory and motor function of those with MTM so that we can improve MTM care and help better design future clinical trials. The study is co-led by researchers at the CMDIR (Congenital Muscle Disease International Registry) and at researchers at the University of Michigan. The study coordinator is Sabine de Chastonay, PhD. This is exciting news for those of us attending this year's conference since Sabine will be there in person to explain the details of the study more fully and to meet with you and your families!
For families who have not yet received genetic confirmation of the MTM diagnosis, Sabine is also coordinating a genetic testing study at no cost to the affected individual! Click here
for more information.
Sabine's involvement and contributions to the work being done in MTM research will make her a wonderful addition to our MTM-CNM Family Conference this year!
The Slaby family recently shared their simple and effective fundraising technique. They've started a letter-writing campaign, sending requests to their family and friends for financial support for the conference. If you don't ask, you don't get... So why not ask!
Also Shannon Mashinchi is throwing a Thirty-One Gifts sale
and the proceeds will support the conference. Just follow the above link and click SHOP NOW! Buying great gifts for your friends and yourself and supporting the conference at the same time--it's a win-win situation. Come on, you know you want to! If you have any questions, shoot Shannon
a message on Facebook and she'll be more than happy to help you get your Thirty-One gifts!
The team wants to say a special thank you to everyone who voted for "Where There's a Will There's a Cure"
for the March Charity of the Month Contest on Facebook! They won and are using those winnings to support the conference! Thank you Whiston family and thank you to everyone who voted! It's all about the team work, guys!
Back by Popular Demand
We had so much positive feedback on our Family Follies at the 2011 conference that the show will go on for 2013! At the last conference, we were thoroughly entertained by the talents ranging from Jacob Berry's inspirational ASL song to the Joe Slaby & Family Band bringing us humor with a rock edge, from Javad Mashinchi's cute raspberries and Will Ward's guitar stylings to a little dance and gymnastic fun from Allie Welter... and many others. So polish your harmonicas, tune your kazoo's, or brush up on whatever fun or funny talent you may want to share with the rest of us. Remember, we'll be laughing with you not at you!