hey everyone, i was wondering about your experiences with speaking and sign language with your boys? i know some boys do speak, some dont. sam is now almost 8...
Sorry to shift from gas prices, but on a brighter note.... I notice we had 4 new members join our group in the last 2 days of April (a total of 7 in the month...
I am sure you are all really annoyed about your "gas" prices n the USA, but this a global health network! not OPEC!!!! You should try paying UK prices, about 4...
GAS WAR - an idea that WILL work This was originally sent by a retired Coca Cola executive. It came from one of his engineer buddies who retired from...
The recent message posted by Kris has me wondering: How many members of this online group are a woman/girl with MTM/CNM??? (Meaning, female with a myopathy...
Hello everyone! Hope all is well. A while back someone posted a website for a signing tape for kids. I am wanting to purchase this for Briar but have lost the...
Hello Just including a link about manifesting carriers, which Pat told be about a few days ago. Thought I would include it here as I seem to remember there are...
In the "Links" section, I just added fast-links to "PubMed", which provides free abstracts (and sometimes entire articles for free) covering most major...
I talked to Dr. John Bach today. He's unsure the conference is doable by August, but he's going to check schedules, sponsorship, facilities, etc.. I will...
I hate to be a downer and bring this up, but sometimes situations occur where we are reminded of our son's mortality. Recently we had a situation where a...
Thanks for all the work done on the wiki. It's a great idea. I agree that when someone finds this group, it can be daunting to look over 3000 posts. I remember...
Tomorrow is the seventh anniversary of my son's birth. I miss him terribly. His diagnosis was made at 6 weeks of age and his death was a week later. He was...
Hi! I've created a PBwiki for this Yahoo! Group. A wiki is an easy-to-use Web page that lets you collaborate with other people--no special knowledge required....
We would be interested in coming to the conference. I am in a class until August 13, so it would be great if it could be after that. I'm not asking to be ...
Thank you, everyone, for your advice regarding how we should approach Sebi's new questions about what he can and cannot do. Although it has only been 24...
Hello Kristin This is really good advice from Wendy - just thought I would add the following. Have you heard of the Muscular Dystrophy publication 'Everybody's...
The following Myotubular_Myopathy poll is now closed. Here are the final results: POLL QUESTION: following on from my question earlier this week, I would like...
thanks to all whom participated, 14 people took part in this poll, and of these 50% had a confirmed x linked diagnosis, interestingly 28% had no mutation...
Hi, gang. We are new to this group. Our 5-year-old son has myopathy, and the biopsy when he was 1-year-old confirmed the myotubular/centronuclear appearance of...
i feel sort of silly even asking this question because honestly at this point, sam in 7.5 months now, i cant even picture this - but...how do you go on...
Hello I have just been to see our genetic counsellor and she advises me that the odds of being a CARRIER of MTM are 1 in 10,000, When I asked her how she come...
hi everyone, i was wondering how your boys do with the warmer weather? sam certainly sweats a ton at times and i always keep him in ligher weight clothes. i'm...
Thought this might be of interest to some … ... From: Myopathy@yahoogroups.com [mailto:Myopathy@yahoogroups.com] On Behalf Of Elizabeth Taylor Sent: 07 April...
Enter your vote today! A new poll has been created for the Myotubular_Myopathy group: following on from my question earlier this week, I would like to conduct...
Linkage analysis As most of you will know we do not yet have a confirmed diagnosis for Regan & Marconi, Marconi had his blood sent off to a lab in Germany for...
Hello all, I hope this message finds everyone well. I wanted to ask for everyone to keep Briar in your prayers. He has just faced his first respiratory...
hi all, we are having difficulty finding a stroller that works well for sam. the one we have right now doesnt have many different adjustment settings for the...
Hello Our son Mael is 9 month now... until now he is to weak to swallow... Now we are trying to train this with an speech thearpist... hoping that it works! ...
