Happy Spring!
MTM-CNM Conference News March 2013
Speaker Spotlight: Dr Childers
Collaborative Community
Easy Fundraiser to Try!
Have you all been looking forward to the end of winter blues and flus as much as us?! Spring is here and we're all excited about this warm, lovely season of new life and flowers in bloom and also about being that much closer to July 26-28th when we will be meeting with many of you again or for the first time at the MTM-CNM Family Conference!

Families are registering and reserving their rooms, and we hope to see even more sign up and join us in beautiful Bloomington, MN this summer! Registration can be done on our newly revamped website (Check it out!), and information about hotel room reservations can be found here. If something comes up to prevent you from attending the conference, you will be refunded your registration fee, and you can cancel the hotel reservations without penalty up to 72 hours prior to the intended stay. So if you're still considering attending the conference, then definitely register and reserve your space now before the rooms run out! 
Martin Childers

We're going to have a great time this year with our family activities and with our guest speakers. One of our confirmed speakers is Dr. Martin "Casey" Childers of the University of Washington, Institute of Stem Cell and Regenerative Medicine. Dr. Childers is leading the exceptionally promising research into gene replacement therapy with Labrador retrievers who have MTM. This research is paving the way to human trials in the future. About his work, he says "I am passionate about finding answers for patients with devastating muscle diseases, particularly those with congenital myopathies and Duchenne muscular dystrophy. As a rehabilitation clinical specialist and basic scientist who investigates rare diseases, it is a privilege to help patients and families struggling with extraordinary burdens. Although we do not have many answers yet, efforts are now yielding new hope for our patients. This is an exciting time of discovery in muscle disease research." We look forward to the opportunity to meet with Dr. Childers again and hear about the latest and greatest in gene replacement therapy and the hope of treating those with Myotubular Myopathy!

Pat and Carol Bowers

The MTM-CNM Family Conference is one distinct part of the larger network of groups working to support the MTM-CNM community through education, research, and networking, so while we work independently, in the big picture of serving the community, we are part of the same team.  In this collaborative spirit, Alison and Paul Frase of the Joshua Frase Foundation (JFF) have generously contributed $1000 to help the conference meet our budget needs. Thank you so much, Paul and Alison! 


We deeply appreciate the Bowers family, who while recently hosting a St. Patrick's Day fundraiser for the JFF also made a bulk t-shirt purchase from our conference  Zazzle store, where all the proceeds directly benefit our conference! Daniel and Melanie Whiston of Where There's a Will There's a Cure are seeking to win a $500 stipend from Chicago's Charity of the Month contest, and they have committed to donate those winnings to the MTM-CNM Family Conference. Where There's a Will There's a Cure is very close to winning! To help out, please follow this link to vote for Where There's a Will There's a Cure by clicking in the box, which puts a check next to the charity name, and then share it with your friends and family! There are only a couple days left in March and we want to finish strong!


Make sure that you also join the  Big Sunflower Project of Canada and USA on Facebook, run by Debbie Majeau in order to spread awareness and raise funds for the conference. Debbie is also hoping to receive approval from the Manitoba Gaming and Lottery Commission to organize a fundraising raffle for the conference, so keep a lookout for that as well on the Facebook page!

Will's Jeans for Genes
Mark and Erin Ward recently held a Jeans for Genes Fundraiser at Will's school! Thanks to the generosity of Will's school staff and family and friends, who participated in "I Wear Jeans for Rare Genes", $752 was raised for the 2013 MTM-CNM Family Conference on Rare Disease Day! Will's great-aunt is also getting her school involved to hold another jeans day for the conference in April. This is a great fundraising idea we can all try! Will you consider hosting a jeans day at your child's school or your workplace to raise awareness and funds to support the conference?

If you'd like tips and pointers on pulling off a Jeans for Genes fundraiser, contact Erin at 
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The MTM-CNM Family Conference is a team effort, friends! And together, we can do this!!


Warmest regards,


The MTM-CNM Conference Planning Team!
MTM/CNM Family Conference
William Prosser MTM Warrior
Visit Our Zazzle Store!
Marie, Stesha, Jona 2011
Donate to the Conference!