I wanted to let you all know that the 2008 PPMD conference in Washington DC will be Feb 10-12. The link below has the information. I hope to see you all...
Hi John. What a lovely email...thank you for your response. My son met his wife next door! She is about 6 yrs. younger and was only about 10 yrs. old when we...
Hi Reina, I am glad you enjoy reading my blogs and getting encouragement from them; that is what I hope my blogs accomplish. Your son seems to get on with his...
Thank you to all who responded to my post. Nolan is doing pretty good right now. He is in PT and wears bi-lateral AFO's on each leg. He runs ,jumps, and...
Hello, I have a son with DMD and I just meet a lady in my daughter's dance class her son has Becker. He is 13 years old. I was having a conversation with...
Hi Thanks Joyce. I'm not sure if those links still work. Try www.parentprojectmd.org Or please do not hesitate to contact me if I could be of help. Sincerely, ...
Pat Furlong
pat@...
Nov 29, 2007 11:13 pm
20195
You can get some answers about research, etc. at _www.parentproject.org_ (http://www.parentproject.org) **************************************Check out AOL's...
JoyceGlass@...
Nov 29, 2007 10:43 pm
20194
Hello Misty, I have Beckers and both of my sisters have a son with it... they were diagnosed early as i had it and they knew to watch for it....it's not as bad...
Hello all, I havent posted in quite sometime. I would like to know if there are any others here who either have it themselves or has a child with Becker MD. It...
I'm in the desert of southern California, near Las Vegas and we do get cold here, most people do not think a desert would, but the cold just hit just before...
Greg... Where are you located..? Do you have any of the down filled throws? They are so light weight and really warm..we are in VA so we do get some cold...
Thanks for posting about your son... good to hear he has you to help and has nurses to help out. I am sure it is hard at times but sounds like he is hanging in...
Reina, My son has Ullrich Myopathy (formerly called Ullrich Congenital Muscular Dystrophy & other similiar names). His doctor at the Children's Hospital of...
Thank you so much John for the link to your blog. My son is your age, he will be 40 Dec.19th..he was originally diagnoised with Ducheene but it was later...
https://www.duchenneconnect.org ? The above URL should be familiar to all families affected by Duchenne and Becker Muscular Dystrophies.?? This is the address...
Hi, I hope that you can find the info you are looking for. If your son is college age I would seek help from your local vocational rehabilitation office, they...
Hi Ray, I'm Adele and my son Jason is 22 and has DMD. We live in Columbia, Md, so not all that far from you. I know how hard the van issues is. I've been...
Hello Ray, I fell so bad for you. I hope you can get another van soon. My son also has DMD.We live in Arlington Tx. We can not afford to buy a van. We have a...
Hello, I want to first off introduce myself. My name is Ray and I'm a 49 year old guy (50 soon) who is the stepdad of a 13 year old boy with DMD. My wife and...
-Reina, yes it is the same. The respiratory therapist at Children's hospital let him try one there and placed the order she set the setting , but when the...
We got the machine through Medicaid. The supplier did not say how often to use it , but Children's hospital had told us when they ordered it to do a session of...
Hi Everyone: Emma Elizabeth's memorial service was today. It was beautiful. As I sat, surrounded by Emma Elizabeth's family and friends, I was struck by...
I am glad to hear your son is doing so well and that he is independent. He reminds me of me at that age. Peace, John There is no cure for birth and death save...
My son is 16 and doing very well compared to some. He lost his ability to walk nearly 3 years ago. He is nearly independent at his high school (just needs...
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