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A hopefull trial   Message List  
Reply | Forward Message #146 of 592 |
RE: [dysferlin] A hopefull trial

I've been lurking on this list--too busy to post anything lately!  Although granted, it's hard to define "lurking" on list with such few posts.
 
Brad Williams asked me about the IVIG trial and I wrote to the investigators to get some details about their manuscript.  They finally wrote back (the main investigator had been out of town).  It sounds like the woman treated did have a genetic diagnosis of dysferlin deficiency.  We may invite the investigators to apply to MDA for funding to do a small pilot study (will likely take place in Germany because that's where the investigators are located).  On the other hand, if I can find any US investigators interested in following up on this single case, we may be able to fund something here.  The results were intriguing, but they only treated a single person.
 
I'll keep this group in the loop if we do manage to follow up with a pilot study.
 
Sharon
 
Sharon E. Hesterlee, Ph.D.
Director of Research Development
Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, AZ 85718
(520) 529-5433
shesterlee@...
-----Original Message-----
From: dysferlin@yahoogroups.com [mailto:dysferlin@yahoogroups.com] On Behalf Of AIR-COM
Sent: Friday, May 19, 2006 6:29 PM
To: dysferlin@yahoogroups.com
Subject: Re: [dysferlin] A hopefull trial

That's good news...
 
I am wondering what happend to the rest of the group...
Nobody posts lately. Maybe everybody got cured and they run away...
 
Was a lady in the group who participated in the myo -29 study from wyeth. I am wandering how is she doing.
 
Regards
Mathew
 
Mon May 22, 2006 4:45 pm

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shesterlee
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Forward 		Message #146 of 592 |
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Hi everybody.I found this article.It is hopefull isn't it: Treatment with Intravenous Immunoglobulin Improves Muscle Strength in a Patient with... 		izzetbesi
Offline Send Email 		May 20, 2006
12:08 am

That's good news... I am wondering what happend to the rest of the group... Nobody posts lately. Maybe everybody got cured and they run away... Was a lady in...
AIR-COM
vlacas2002
Offline Send Email 		May 20, 2006
2:20 am

I posted a couple of times but the moderator didn't look at my posts and so they did not show. AIR-COM <matanas@...> wrote: That's good news... I...
John B
bluedestin
Offline Send Email 		May 20, 2006
4:55 pm

Thank you very much!!! This gives me hope! I want a cure so bad! izzetbesi <izzetbesi@...> wrote: Hi everybody.I found this article.It is hopefull...
John B
bluedestin
Offline Send Email 		May 20, 2006
4:55 pm

Yes, I thoroughly agree that it is very hopeful, thanks for sharing it with the members. I had come across this abstract a few weeks ago. Since then, I have ...
baw1064
Offline Send Email 		May 21, 2006
4:39 am

Hi. I agree that anything new is exciting. I was previously diagnosed with Polymyositis & had a week long course of Intravenous Immunoglobulin as part of...
Suzanne Croft
craftycroftyuk
Offline Send Email 		May 21, 2006
11:54 am

I've been lurking on this list--too busy to post anything lately! Although granted, it's hard to define "lurking" on list with such few posts. Brad Williams...
Sharon Hesterlee
shesterlee
Offline Send Email 		May 22, 2006
4:46 pm

Four years ago, when I was diagnosed with LGMD 2B, Dr. Karpati from Montreal prescribed IVIG. I had two back to back treatments, but then I moved and my new...
Amanda
inquisitivem...
Offline Send Email 		May 24, 2006
11:53 pm

Amanda, That's very interesting, and thanks for telling about your experience with IVIg. Since right now we're trying to figure out if some type of trial is ...
baw1064
Offline Send Email 		May 25, 2006
1:37 am

Hi Brad, I can't remember if Dr. Karpati treated other dysferlinopathy patients with IVIg but I wouldn't be surprised if he had. He is among the world's...
Amanda
inquisitivem...
Offline Send Email 		May 25, 2006
3:03 am

Amanda thank you for sharing your experience.It is very important and im agree.I think it was ivig.I want to ask some quesions.Can you reply at here or to my...
izzetbesi
Offline Send Email 		May 27, 2006
5:14 pm

That is correct, at the time my condition was not 100% confirmed. My biopsy showed a possible depletion of the dysferlin signal. As my file says: "In view of...
Amanda
inquisitivem...
Offline Send Email 		May 27, 2006
10:09 pm

So nice to hear from you Amanda. I wana get some of that too... I found this info in the following link. ...
AIR-COM
vlacas2002
Offline Send Email 		May 25, 2006
2:02 am
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