My mother also was a care giver for our son Joshua the first 3 years of his life - he is now 11 years old. They have a very special bond that only grandmothers...
Hi all! My name is Heather, I am Kaylee's aunt. Kaylee was taken back to the hospital late Saturday night with an elevated pulse, and bp. She was severly...
I too am a grandmother of a MTM grandaughter. Kaylee, in fact. She is a real blessing. I have noticed looking through lots of MTM information that there are...
Is it that your insurance doesn't cover it or that they just rejected the claim as not necessary? Have you attempted a medical necessity letter from the...
Tomorrow (Saturday, Nov. 10) in Manhatten, is a play/reading, written by Paul Kahn, a playwright with MTM. Sarah and I will be there. We like the idea of...
Hello Everyone, Even though we live in Fl and it does not get as cold as folks up north - we do get all the same bugs. Joshua has never received the flu shot...
Hello Everyone, Even though we live in Fl and it does not get as cold as folks up north - we do get all the same bugs. Joshua has never received the flu shot...
Dear Teena and Michael, Welcome to this group! Thanks for the offers for help, too. We have a son who is 10 years old and one of the main concerns I have is...
Hi Heather, Sorry I'm late with the reply, I am behind on email. I'm so sorry to hear about Kaylee back in the hospital. I have heard of someone else...
Hello Tom Welcome to the group. I live in the UK. My father and I have the dominant form of Centronuclear Myopathy. Looking forward to getting to know you. ...
Once again Kaylee is home from the hospital. This time she is back to her old self, nothing but grins and giggles. She is still experienceing some of the...
Good to hear that Kaylee is home again. ... From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Abbie Howeth ...
Wendy, I am interested in finding out more about the 10K run. Adam's Uncle Sean just completed the New York Marathon as a fundraiser for Dr. Begg's research....
I would also like to know the info about the 10K run in the UK. We might jion you Satah. I have been wanting to meet the familes in the UK. Alison Frase...
I recently came across an article that said research is showing that elderberry actually blocks viruses from attaching to and invading our body's cells!...
As I have mentioned to some my son is putting together a new website for our upcoming foundation, Javad's Place, for his senior project. I envision that this...
Hello, if any of you do decide to come to London, do let me know, it would of course be nice to meet you all, but also I live/work and grew up in London I...
Hi Guys Sorry I’ve been quiet – had a busy past few days and am trying to get together some notes from the Congenital Myopathy Day which was very helpful...
Hello Pat and Sarah How was the play? ... From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of pinksarah21 Sent:...
I was wondering if any other carriers of MTMX had problems with their eyes like I do. My eye surgeon is asking whether any other carriers have has this...
Very interesting that you should ask!!! As a matter of fact, I struggle all the time with my right eye not staying focused ahead but turning outward also,...
Hi Simone: My son, Sebastian, has MTM, and I am a carrier. My eyes do not have the weakness you describe, but Sebi's do. Right now, he wears glasses to try...
Hi Sarah, I've just had the time to read your fantastic article which gives more publicity for Myotubular Myopathy/Centronuclear Myopathy! Congratulations to...
Toni, Thanks for asking. The reading of the play was terrific. My wife Sarah and I only go into NYC about once or twice a year, and this was definitely worth...
Hello Familes, Forwarded on to me from Scott Grant - very interesting. I am forwarding this on to our researchers for a responce - will keep you all in the...
Last summer, I went to this amazing conference for families nationwide who are committed to advancements in genetic diseases. I thought that the program last...
Alison, Thanks! This is a great article. Stem cells almost certainly have a very substantial role to play in treating muscle disorders like MTM/CNM. In this...
Lets hope that Mr Bush has a reality check on this issue and changes his policy on stem cell Research, I am sure if stem cells could be turned into Oil he...
