MTM-CNM Family Connection

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Meet The Family Conference Planning Team

Our Mission

(L to R): Shannon, Chrissie, Erin, Marie

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. 

Previous Conferences

The first MTM-CNM Family Conference was held in Houston, TX in 2009.

The second MTM-CNM Family Conference was held in Bloomington, MN in 2011.