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dysferlin · Dysferlin Deficiency

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Messages 861 - 891 of 891   Oldest  |  < Older  |  Newer >  |  Newest
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861 noble frank
ntf42@att.net Send Email
Aug 20, 2012
6:20 pm
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...
862 lrufibach Send Email Sep 8, 2012
12:00 am
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...
864 lrufibach Send Email Sep 14, 2012
7:43 pm
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,...
865 baw1064 Send Email Sep 15, 2012
12:10 am
(I have reported this announcement to fix a typo) The Jain Foundation would like to announce that recruitment for the Dysferlinopathy Clinical Outcome study...
866 traumajunkie1961
traumajunkie... Send Email
Sep 21, 2012
12:02 pm
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...
867 John Beaubien
bluedestin Send Email
Sep 21, 2012
1:56 pm
How old is he? Is he working? Sent from my Droid Charge on Verizon 4G LTE ... From: traumajunkie1961 <jackielrobertson@...> To: <dysferlin@yahoogroups.com>...
868 John Beaubien
bluedestin Send Email
Sep 21, 2012
2:46 pm
What state do you live in? Sent from my Droid Charge on Verizon 4G LTE ... From: traumajunkie1961 <jackielrobertson@...> To: <dysferlin@yahoogroups.com> ...
869 jackie robertson
traumajunkie... Send Email
Sep 22, 2012
12:46 am
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:...
870 jackie robertson
traumajunkie... Send Email
Sep 22, 2012
12:47 am
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 ...
871 jackie robertson
traumajunkie... Send Email
Sep 22, 2012
12:09 pm
he 27 , and not working, we live in texas ... From: John Beaubien<mailto:bluedestin@...> To: dysferlin@yahoogroups.com<mailto:dysferlin@yahoogroups.com>...
872 John B
bluedestin Send Email
Sep 23, 2012
3:55 am
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...
873 John B
bluedestin Send Email
Sep 23, 2012
4:02 am
Does he use a wheelchair / powerchair? If he doesn't have one, does he have Medicare? ... From: jackie robertson <jackielrobertson@...> Subject: Re:...
874 traumajunkie1961
traumajunkie... Send Email
Sep 23, 2012
6:23 pm
He uses a power chair, And he has Medicare. How much can you use or your arms...
875 A J
kingpin3dd Send Email
Oct 1, 2012
8:55 pm
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...
876 John B
bluedestin Send Email
Oct 20, 2012
5:57 am
I can still most of the use of my arms. They are just not as strong as they used to be. ... From: traumajunkie1961 <jackielrobertson@...> Subject:...
877 John B
bluedestin Send Email
Oct 20, 2012
6:09 am
For New York...   Vocational Rehabilitation http://www.acces.nysed.gov/vr/do/home.html   List of Centers for Independent Living ...
878 John B
bluedestin Send Email
Oct 20, 2012
6:10 am
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:...
879 Keertee K. Saxena
kkstays Send Email
Oct 20, 2012
9:56 am
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...
880 John Beaubien
bluedestin Send Email
Oct 20, 2012
2:35 pm
Thx Sent from my Droid Charge on Verizon 4G LTE ... From: Keertee K. Saxena <kkstays@...> To: "dysferlin@yahoogroups.com" <dysferlin@yahoogroups.com> ...
881 Jennifer Millican
millicanjenn... Send Email
Oct 24, 2012
6:28 pm
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...
882 A J
kingpin3dd Send Email
Oct 27, 2012
6:39 pm
Thank you. Sent from my iPhone ... Thank you. Sent from my iPhone On Oct 20, 2012, at 2:09 AM, John B < bluedestin@... > wrote: For New York... ...
883 ameliabedillia Send Email Dec 18, 2012
11:37 pm
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...
884 Bipin Panickar
bipin.panickar Send Email
Dec 19, 2012
5:00 am
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...
885 Christinabelle
okchristinab... Send Email
Jan 21, 2013
2:46 pm
http://www.madmicks.com.au/components/com_content/fitns.html Christinabelle...
886 Jennifer Millican
millicanjenn... Send Email
Feb 1, 2013
3:56 pm
hello! http://eshphotography.com.au/wp-content/themes/toolbox/onsvr.php Jennifer Millican...
887 ike2tina Send Email Feb 14, 2013
4:01 am
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...
888 lrufibach Send Email Mar 20, 2013
4:40 pm
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...
889 lrufibach Send Email Mar 20, 2013
4:49 pm
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...
890 noble frank
ntf42@att.net Send Email
Apr 2, 2013
1:40 pm
http://www.zonabodyboardshop.com/includes/friends.php?gpjeyrvmg722md =================== The opinions stated above are those of a small fish that lives in my...
891 Keertee K. Saxena
kkstays Send Email
Apr 12, 2013
5:57 pm
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...
Messages 861 - 891 of 891   Oldest  |  < Older  |  Newer >  |  Newest
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