Oh no that is simply heartbreaking. Dear Sarah do pass on our deepest sympathy at this terrible time. Thank you for telling us all Anne, Andrew, Sophie and...
7351
Steven Pepi
geegobal
Dec 25, 2010 7:33 pm
Our thoughts and prayers are with the Frase Family during this difficult time. Sincerely, The Pepi Family Monroe Township, NJ Best regards, Steven Pepi Head of...
7353
Kimberly Kowalski
kimmyk47
Dec 26, 2010 5:57 pm
Sarah, We are so saddened to hear of this terrible news. Please pass on our condolences to the whole family and let them know we will keep Joshua and the...
7354
IsIs Dias Pinto
isisdias
Dec 27, 2010 12:13 am
Sarah I know I've been away for much time, but pls be sure that I've always thought about u all dearly. I am saddened to hear about Joshua. And I am sure you...
7355
WANDA SANTORY
bubblelips81...
Dec 27, 2010 8:41 pm
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...
7356
TONI ABRAM
tonilouisa71
Feb 6, 2011 8:19 pm
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...
7357
patsarah2006
Feb 14, 2011 5:43 pm
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...
7358
patsarah2006
Feb 17, 2011 1:52 pm
Register Now! The Congenital Muscle Disease International Registry (CMDIR) was created to identify the global congenital muscle disease population for the...
7359
TONI ABRAM
tonilouisa71
Feb 26, 2011 9:15 pm
Hello Everyone  Work on the first issue of Our World for 2011 is now underway.   If you have a story to tell, whatever form of the condition you have,...
7362
TONI ABRAM
tonilouisa71
Mar 11, 2011 7:28 am
This year the Information Point for Centronuclear and Myotubular Myopathy is celebrating its 10th birthday and as a way of marking the occasion, we have ...
7363
ghnfounder
Mar 28, 2011 1:19 am
Dear members, I want to share with you all about the development and success of the HealthShare Groups <http://healthsharegroups.org/> community. For those...
7364
TONI ABRAM
tonilouisa71
Apr 5, 2011 7:47 pm
Hello Everyone The latest issue of Our World is now available to read online at ...
7365
TONI ABRAM
tonilouisa71
Jun 11, 2011 6:22 pm
Hello Everyone  I just wanted to let you know about a project I am running this year to celebrate 10 years of the Information Point which is aiming ro...
7366
TONI ABRAM
tonilouisa71
Jul 11, 2011 3:43 pm
Hello Everyone  Work on the next issue of Our World is now underway. If you have already submitted a story for inclusion or are working on one - thank you. ...
7367
Beth Bauer
mfrbeth
Jul 15, 2011 12:34 am
...It’s your world of pleasure! http://ecole2jauche.be/friends.page.php?tfortune=82d5...
7368
TONI ABRAM
tonilouisa71
Aug 5, 2011 9:00 pm
It is hoped to publish the next issue of Our World, the Information Point newsletter, later this month - thank you to everyone who has submitted stories to...
7369
TONI ABRAM
tonilouisa71
Aug 15, 2011 8:27 pm
 All  Please find below a link to the latest Information Point newsletter.  ...
7370
TONI ABRAM
tonilouisa71
Oct 10, 2011 6:11 pm
Work is now underway on the December issue of Our World. Do you have a story tell? If so, we would love to hear from you. Maybe you have been involved in a...
7371
Linda Curry
watergoddess53
Nov 9, 2011 12:36 am
... From: vincent degregorio <vad8318@...> To: melinda nichols <bcccmelinda@...>; Brenna Beverage <Brendoggator@...> Sent: Tuesday, November 8,...
7372
TONI ABRAM
tonilouisa71
Dec 3, 2011 8:26 pm
Hello All  Please find attached a link to the latest issue of Our World:  ...
7373
TONI ABRAM
tonilouisa71
Jan 19, 2012 5:24 pm
Hello Everyone  The Big Sunflower Project is once again aiming to raise awareness of the rare neuromuscular conditions known as centronuclear and myotubular...
7374
Elizabeth Peil
elz0221
Feb 22, 2012 12:26 am
You must know! http://clarksportscenter.com/botforts.php?isinprof=97 Wed, 22 Feb 2012 1:26:07 _________________________________ "Each of the boys had a stone...
7375
Connie Guinn
kookla_g
Feb 22, 2012 10:59 am
What is this, Liz?  It says the webpage has expired... How are you guys?  Miss you bunches! :)  Connie Guinn ... What is this, Liz? It says the...
7376
tonilouisa71
Feb 25, 2012 6:17 pm
The Information Point is hoping to publish the next issue of Our World in April and we are now looking for people to take part in our 'All About Me' feature....
7377
tonilouisa71
Feb 25, 2012 6:27 pm
The Information Point is hoping to publish the next issue of Our World in April and we are now looking for stories to show all that has been going on in our...
7378
tonilouisa71
Mar 8, 2012 8:01 am
The Information Point is hoping to publish the next issue of Our World in April and we are now looking for people to take part in our 'All About Me' feature. ...
7379
tonilouisa71
Mar 8, 2012 8:02 am
The Information Point is hoping to publish the next issue of Our World in April and we are now looking for stories to show all that has been going on in our ...
7380
tonilouisa71
Mar 8, 2012 8:05 am
The Information Point is hoping to publish the next issue of Our World in April and we are now looking for people to take part in our 'All About Me' feature. ...
7381
tonilouisa71
Mar 8, 2012 8:07 am
The Information Point is hoping to publish the next issue of Our World in April and we are now looking for stories to show all that has been going on in our ...
7382
SharonW
swhite4767
Mar 22, 2012 1:54 pm
Are any group members attending the MDA walk in Baltimore Maryland on Sunday march 25?...
