MTM-CNM Family Conference Newsletter
Memorial DayMay/2013
In This Issue
Always in Our Hearts
Reflection Room
Medical Registry
Quick Links
Jordan's Grove

Jordan Davis
Jordan Davis

Always in Our Hearts
The bonds of shared experience among the families of our community run strong. Yet some of us have experienced something more than others in the journey of life with MTM-CNM, namely the loss of an affected loved one. Please know that if this is part of your experience, you are still a vital part of our community and that you belong at the conference as much as those whose loved ones survive. We want you to be with us and to share the memories of your precious one, whom we are honored to remember in our hearts always.
Firefighter Gabe
Firefighter Gabe Currin

You have our warmest greetings this Memorial Day weekend. This is a special time of remembering our fallen military heroes, who gave their lives in the fight for the freedoms we deeply cherish in America today--may these brave men and women always be honored in our hearts and memories!

In this unique community, we also cherish our own unforgettable fallen heroes. True, these children and young men and women were not soldiers in a literal sense: they never fought in a war or saw a battlefield, yet in our eyes they will always be heroes, who struggled bravely just to live each day, and by so doing they enriched our hearts and souls and made our world a more beautiful place.
Reflection Room
A Conference Tradition
2011 Reflection Room Frase, Guinn, Crane
Their lives continue to shine in our memories.

The Reflection Room is one way that our entire community stands in solidarity with one another in the face of the loss of one of our unique warriors. At our family conference, we remember those who continue to teach and to inspire us, even when they are no longer with us. The conference is a healing place and a welcoming place for the precious memories of your loved one. If you have lost a child or loved one with MTM-CNM, please email us a picture of him or her with subject heading "Reflection Room" and include the birth date and an "angel date" so that we can honor your memories and your never-ending love in the conference Reflection Room. 

You may also go to our MTM-CNM Family Conference Facebook page to see all of the beautiful pictures in the 2011 conference Reflection Room. 

Reflection Room Embassy Suites
We remember. We hope. We love.

A Request
Medical Registry
MTM CNM Registry
As many of you know, promising research is moving forward in the area of MTM and CNM. One of the important components of this is for affected individuals and carriers to contribute their information to registries, which can assist the doctors as they design and create goals for human trials and which can inform us how well the treatments are performing. Some families have asked if it is possible for the information of their deceased loved ones to contribute to this work. The answer is yes. All who are or who have been affected by MTM and CNM may be included in the medical registries.

As we highlighted in our last newsletter, Sabine de Chastonay is the MTM studies director at the CMDIR, Congenital Muscular Dystrophy International Registry. Simply click on the links in order to participate in the medical registry or in the phone-based events study.

Thanks to the work of the UK's Myotubular Trust, a very exciting development on the international scale is the Myotubular and Centronuclear Myopathy Patient Registry, an international database which is specific to our condition. This Registry will collect simple genetic and medical information on all child and adult patients, living or deceased, affected by any of the genes that cause myotubular and centronuclear myopathy. They also welcome registration from all female carriers of XLMTM, even if they are not showing symptoms of myotubular myopathy. Please register and join the Facebook page for the latest updates.
Again we hope that everyone has a happy Memorial Day weekend remembering and celebrating the heroes of our country and the heroes of our hearts!

The MTM-CNM Conference Planning Team!
MTM/CNM Family Conference