Hello Everyone  The first issue of Our World for 2011 will be published in April and the Information Point is now looking for contributions, which will be...
Register Now! The Congenital Muscle Disease International Registry (CMDIR) was created to identify the global congenital muscle disease population for the...
Hello folks. For those members of our CNM community who do not yet have a genetic diagnosis I would like to share that a new genetic test is available. The...
There is nothing harder than losing your child. I am so sorry to hear this news. Because of Joshua, he has united so many MTM families. He is an angel in...
Sorry if you all get emailed twice but I am writing to apologize for the S.pam sent earlier. Please DO NOT open those messages, thank you. Rachel Bronstein...
Hello Everyone The final Our World of 2010 will be issued in December and the Information Point is now looking for articles to include. Our World couldn't...
Hello All  The final Our World of 2010 will be published in December and I am now looking for people to take part in our All About Me feature.  If you...
SAVE THE DATE!!! The 2011 MTM-CNM Family Conference is rapidly approaching! Friday, July 22, 2011 at 4:00am - Sunday, July 24, 2011 at 3:00pm in Minneapolis,...
Hello Everyone I am working on the next issue of the Information Point newsletter and it has been suggested to me that I write something about how to explain...
i sent info on ronnie feuer ok to use i'm his dad not real good on the laptop but tryin to help with info i sent info on ronnie feuer ok to use i'm his dad...
Hello Sarah I don't remember whether I have replied to you previously or not. My name is Toni - my father and I are diagnosed with  autosomal dominant ...
My son has been just been diagnosed with the autosomal dominant form of myotubular myopathy. I am looking for anyone who either has or know someone with this...
I want to let you know of my son, Benjamin Guinn's, passing: Benjamin Elisha Guinn September 12, 2002 to June 12, 2010 Please say a prayer for the Guinn family...
Hi All, I have just sat down and read all the mails, and my heart goes out to all of you in your battles. I just wanted to give my two cents. Matthew was born...
My son Justin is almost 6 years old, he was diagnosed with mtm1 at 4 weeks old. I have been away from this group for over 2 years. Justin is doing very well....
The following question has been received from Elizabeth De Chene at the Beggs Laboratory. If you have experience of this topic, please get in touch with...
I'm wondering who else out there has boys who have had a number of fractured bones due to them being very fragile? I am curious if certain other things go...
my son had liver problems in the early years. He had elevated enzymes, jaundice, itching, and a palpable liver edge. all of it resolved later on, little was...
My son had a low sodium "incident"; when he was hospitalized once. He developed a low sodium and no explanation. I don't remember how we resolved it, or if it...
I'm a female adult who was diagnosed with MTM. Are there other females in this group who also have this disease? I'm looking for other women who have this...
Wow, I joined in December, but haven't seen any posts until now. How often is this site used? Is it just for children with the disorder? Thanks in advance....
The Information Point for Centronuclear and Myotubular Myopathy has a fresh new look. Â Earlier this year, a decision was taken that the Information Point...
DEAR SIR, MY YOUNGER BROTHER(AGE 14)HAS BEEN FACTED BY MYOPATHY, HIS CPK LEVEL IS 8000 IU. HE IS STRUGGLING TO WALK WITHOUT ANY HELP, SPECIFICALLY HIS RIGHT...
