MYOTUBULAR MYOPATHY & CENTRONUCLEAR MYOPATHY

How the first Conference was born

We are a diverse group of parents from all across the country who have the deep desire to connect the global MTM/CNM community.

Each of us started with the diagnosis of MTM or CNM. Then we started looking for information and found that this diagnosis was so rare we may never meet another with the same diagnosis.

After the shock wore off, we each decided it was time to find some
answers for ourselves! We got onto the internet where we "met" other families and became fast friends. We talked and dreamed about the day when we could meet in person.

The birth of Facebook gave us the opportunity to "talk" to each other and connect in a way never before. This drove us more than ever to create a conference. The though of it was electrifying!

The 2009 MTM-CNM Family Conference was an incredible success. Families from all over the United States came together, ate together, rejoiced and cried together. It was amazing! It was encouraging, but most of all it was EMPOWERING!

Many amazing doctors volunteered their time to speak to us, Dr. Beggs and Dr. Dowling to name a few. Elizabeth Dechenne encouraged us to participate in research. The amount of knowledge in the room was incredible!

It was clear at the end that we HAD to do this again. Meeting and sharing is crucial to growing our cause and educating and empowering families.