October 2012
Good things come to those who wait, and this is very much the case for those of you who have been eagerly anticipating the announcement about the next conference! The MTM-CNM Family Conference Planning Team is pleased to announce that our next conference will take place from July 26-28, 2013 in beautiful Bloomington, MN! 

Shannon, Chrissie, Erin, and Marie
Shannon, Chrissie, Erin, and Marie
The 2013 MTM-CNM Family Conference team consists of returning members: Chrissie Sanders, Erin Ward, Shannon Maschinchi, Stacey Cummins, Diana Manny, and Marie Wood. Conference news can be found in these Constant Contact updates (make sure to join our mailing list!) and on our official Facebook page. Specific questions can be directed to Erin at [email protected].  

For those of you who are new to MTM-CNM, we realize that you might be a little overwhelmed by the many, wonderful groups in our community, within the US and world-wide, who are building awareness and supporting research for MTM-CNM. These groups are an integral part of our diverse MTM-CNM family and all are deeply appreciated for their work. We whole-heartedly encourage you to familiarize yourself with them! Our particular group is the MTM-CNM Family Conference, which is financially supported through tax-deductible donations to the Myotubular Myopathy Resource Group (MTMRG), founded by the Scoggins family. 

This upcoming event in 2013 will be the third bi-annual MTM-CNM Family Conference, the first taking place in Houston, TX in July, 2009 and the second taking place in Minneapolis, MN in July, 2011. The mission of our conference is two-fold: 

1) With a deep awareness of the unique challenges in having or caring for someone with MTM-CNM, we seek to provide an enjoyable and enriching family-oriented conference experience that educates and unites the individuals and families affected by Myotubular (Centronuclear) Myopathy in supportive friendships and life-enhancing networking opportunities. 

2) With hearts full of hope for the future, we seek to connect families in person to the top researchers in potential MTM-CNM treatments in order to get them acquainted with the latest advances in medicine and assistive technology and to get families signed in and registered in the various studies that will push research forward. 
 Hotel and Venue
Family Conference 2011
After some searching and discussion, our team again selected Minnesota for the conference due to its centrality between the east and west coasts, the pleasant summer temperatures, and the accessible qualities of Bloomington (and nearby Minneapolis) which make it an ideal location for all of our attendees to explore. 

We are very excited to share with you all that we've secured a contract with the Best Western directly across the street from the Mall of America! They have been more than accommodating regarding our needs and are absolutely thrilled to be working with us. We have 40 rooms (including 10 ADA rooms) booked for our conference at only $129.99/night, which is a steal compared to the usual July rates of $189! Through fundraising efforts and goals, we hope to be able to bring down the room rates for all of our attendees even more. You can make your reservations simply by calling 952-854-8200 and mentioning the MTM-CNM Family Conference. For those of you who might want to make this trip a more extended stay, the discounted rate of $129.99 is available to our conference attendees for the conference days as well as three days prior and three days after the conference dates.  

Best Western has been chosen as the conference venue for a number of reasons. Their enthusiasm, generosity, and confidence in contributing to the success of our conference is certainly a factor as is the convenience of their location. For those flying, from the airport you may take a light-rail train, which is wheelchair accessible, to the Mall of America stop. From this stop, the Best Western is an approximately 10 minute walk across the street. The Best Western also offers a free shuttle to and from the airport and although it is not wheelchair accessible, we can arrange for your luggage to be picked up by the hotel shuttle if you need to use the light-rail to make your journey to the hotel more enjoyable. Our goal is to make your traveling experience as comfortable as possible, so don't hesitate to contact us with any concerns you might have. We're certain that once you arrive, you'll find that the hotel's zero-entry (sloping, walk-in) pool is an ideal place for families to lounge, relax, and play. Or if you prefer, you can hit the hotel gym, which is open 24 hrs a day. Another plus is the hotel's proximity to the Mall of America, which boasts of a magnificent diversity of shops and restaurants as well as numerous exciting attractions for kids and kids-at-heart such as Nickelodeon Universe, the SeaLife Aquarium, Lego World, miniature golf, and much more! 

Come lounge poolside at Best Western
Best Western


We're so pleased to be serving our community again and hope to see many old and new faces at the MTM-CNM Family Conference of 2013. So save the date, keep a lookout for future communications from our team, and please feel free to contact us with any questions!
The MTM-CNM Conference Planning Team!
MTM-CNM Family Conference

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