MTM-CNM Family Connection Newsletter March 2015 v.1

You often hear the simple truth stated that a mother or a father does not stop being a parent when their child passes away. In other words: once a mom or dad, always a mom or dad. A similar principle holds true in our MTM-CNM family. When one of our families loses the affected loved one, our MTM-CNM community still remains your family, and just like a family, we are willing to accept you wherever you are in your process of bereavement, to come alongside you, to share the hurts even as we shared the joys and continue to share the sweet memories. 

It is our desire that, in this way, the conference might always be a place that nurtures hope and healing, so it is with thankful and gratified hearts that we share the following story of the Koh family, who was represented at the 2013 conference by MTM mom, Carrie Koh. We hope her story touches you as much as it has touched us.
The MTM-CNM Family Conference Planning team!

My First Conference Experience 
by Carrie Koh

A tender moment, a treasured memory


I attended my first MTM conference in 2013, only 6 months after the passing of our sweet Elliot.  While attending the conference was one of the most difficult decisions I have made since he passed away, it was also one of the most rewarding, healing, and comforting experiences I have had.


The initial thought of attending the conference filled me with fear and doubt: Would I be putting myself in a situation where I questioned our heart wrenching decisions throughout Elliot's life? Would it be too hard to meet other boys who are living with Elliot's disease? Would I be able to relate to other families, since my son was no longer with us?  As it turned out, attending the conference was the best decision for me.


I have to admit, I was an emotional mess the entire weekend. Each family was asked to introduce themselves. One by one each family told their story. When it was my turn, I made it about 2 sentences before I broke down.   The room came together with support and love for me.  I was overwhelmed to be supported by an audience that truly understood my loss.  I was not alone!


As the conference continued, I was most impressed by the scientific advances- both in treatments and quest for a cure.  The researchers, those that fund them, and all the families who have contributed through their experiences, truly deserve our gratitude for the work they do.


As I reflect on my experience, it was the connections with families that I have cherished the most.  I remain in contact with many of the people I met at the conference via Facebook, and look forward to meeting more.  I met so many warriors that weekend that stole my heart.  Sadly, as is the reality of this disease, several families lost their boys since the last conference.  However, I do hope these families return to this safe place to talk about our special angels.


I look forward to attending this year's conference--this time with my husband, Ed and Elliot's little brother, Oliver in tow.  I truly hope to see you there.




Reflection Room

One of the cherished traditions of our conference, in which we hope to support and offer solidarity with the bereaved members of our community, is to set aside a quiet place away from the hustle and bustle where we can view pictures, silently reflect, and remember our loved ones.

If you would like us to include your MTM or CNM "angel" in the MTM-CNM Family Conference Reflection Room and the conference program booklet, please send a photo along with the date of birth and the date of passing of your loved one to with the subject heading: "Reflection Room," and we would be honored to share these precious memories.  
2013 reflection room
We remember. We hope. We love.

About Us

MTM-CNM Family Connection, Inc is a 501c3 non-profit charitable organization with a mission to connect families affected by Myotubular Myopathy (MTM) and/or Centronuclear Myopathy (CNM) to resources, research, and relationships within the MTM-CNM community. 

A primary activity of MTM-CNM Family Connection, Inc is to plan and host a bi-annual  Family Conference  in the United States.

To learn more, please visit us at or join us on Facebook.

Shannon, Marie, and Erin


In This Issue
MTM-CNM Family Connection, Inc MTM-CNM Family Conference Planning Team
Supporting Our Efforts

Thank you so much to the families who are working to help us raise funds for the conference. We also appreciate those of you who have joined us on Crowdrise! 

Please consider creating your own Crowdrise page to help us raise funds for this year's conference, which promises to be the biggest one yet.

It only takes seconds to create the page. Afterwards, you can take a moment to personalize it with a picture or two and a little story about why you support the conference. You can even set a fundraising goal, and then share the page with family and friends on social media or via email.

Every little bit helps support our conference and families!