Welome Tim, thank you for sharing you story. It almost sounds like my story, but I didn't start having symtoms till 25, and now im 33. One word of advice I...
A number of potential therapeutic options (gene therapy, exon skipping, stem cell therapy) have been in the news recently and many of you have been asking...
I want to clarify a few things regarding my previous post on the status of 3 potential therapeutic options for dysferlinopathy (gene therapy, exon skipping,...
(I have reported this announcement to fix a typo) The Jain Foundation would like to announce that recruitment for the Dysferlinopathy Clinical Outcome study...
My son-in-law who now lives with me is getting worse. He can only walk a few steps, I need some help with ideas of getting him to the shower , bathroom, and...
How old is he? Is he working? Sent from my Droid Charge on Verizon 4G LTE ... From: traumajunkie1961 <jackielrobertson@...> To: <dysferlin@yahoogroups.com>...
What state do you live in? Sent from my Droid Charge on Verizon 4G LTE ... From: traumajunkie1961 <jackielrobertson@...> To: <dysferlin@yahoogroups.com> ...
Texas Sent from my Droid Charge on Verizon 4G LTE ... From: John Beaubien Sent: 9/21/2012 2:46:33 PM To: dysferlin@yahoogroups.com , traumajunkie1961 Subject:...
27 and no Sent from my Droid Charge on Verizon 4G LTE ... From: John Beaubien Sent: 9/21/2012 1:56:52 PM To: dysferlin@yahoogroups.com , traumajunkie1961 ...
he 27 , and not working, we live in texas ... From: John Beaubien<mailto:bluedestin@...> To: dysferlin@yahoogroups.com<mailto:dysferlin@yahoogroups.com>...
I live in Arizona. I have Miyoshi Myopathy and can only take a few steps now. I just turned 29 years old. I work full time and I"m going to school part time to...
Does he use a wheelchair / powerchair? If he doesn't have one, does he have Medicare? ... From: jackie robertson <jackielrobertson@...> Subject: Re:...
Hi John B, Similar to what you found for those in Texas, do you know anything about finding help in New York. Any help would be appreciated. Thanks. Aman Sent...
I'm a bit tired, you understand what I said. I still have most of the use of my arms. ... From: John B <bluedestin@...> Subject: Re: [dysferlin] Re:...
Just keep your faith and hope strong John. Don't let this disease depress you, fight it. Remember what others do is fight against the world, what we need to do...
Thx Sent from my Droid Charge on Verizon 4G LTE ... From: Keertee K. Saxena <kkstays@...> To: "dysferlin@yahoogroups.com" <dysferlin@yahoogroups.com> ...
Hi, I missed this thread. I do not walk at all and don't stand transfer anymore for the last year due to a few falls and near falls. I am still mostly...
Hi everyone my name is Amy. I reached this site through the Jain foundation website and have been lurking for some time and decided today that it is about time...
Hello Amy, M Bipin frm India.... Even, I was diagnosed with d same disease namely,"Miyoshi Myopathy"; or "Dysferlinopathy" in summer 2004 @ 19. Last year, I...
Hello all, I am the mom of a 38 year old son who has LGMD. He lives in Loxahatchee, FL (near Palm Beach, Jupiter, West Palm, etc.) and I have been trying to...
The Jain Foundation would like to congratulate one our registrants, Bliss Welch, on winning the title of Ms. Wheelchair Tennessee 2013. We know that she will...
Dear Belinda, There are 20 different forms of LGMD. Do you know what kind your son has? If not, the Jain Foundation may be able to help. You can find...
http://www.zonabodyboardshop.com/includes/friends.php?gpjeyrvmg722md =================== The opinions stated above are those of a small fish that lives in my...
Unfortunately the news is not related to patients of our kind, but good to know that genetic diseases of such kind are getting treated. Kindly visit the...
