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Old 06-08-2007, 03:29 PM   #1
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Question becker muscular dystrophy

Hi all,

I am new to this message board. I have BMD and have had a genetic test done which confirmed a deletion mutation of the dystrophin gene. I read the MYO-029 trial info. Hopefully the results come out soon and would help the many sufferers of this dreadful disease. I just wondering, I have read the posts and I see other forms of MD being discussed but not BMD as much..
Does anybody know any new clinical trials going on studying BMD or any new positive therapies being discusssed?. Please post I would love to know more.

 
Old 06-15-2007, 06:50 PM   #2
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Re: becker muscular dystrophy

Hi shren138,

Sorry you've received no replies. I don't have Becker's. I'm a 46 year old male with limb-girdle MD. What caught my attention was that you mentioned the MYO-029 trial. I tried to enroll in that trial in April 2005. I corresponded with Kathryn Wagner at Johns Hopkins, one of the lead researchers. I did not qualify however because I don't have an ABSOLUTE definitive diagnosis. I definitely have Limb-Girdle MD, but we can't figure out which one. I've tested negative for 8 types so far.

The MYO-029 trial seems very promising. I know that phase 1 wrapped up many months ago and the results will be published soon. Let's keep our fingers crossed. Doctor Wagner said I MAY qualify for phase 2 or 3.

The MDA website has a research tab that lists ALL past and present trials and the results. Check it out.

Anyway, good luck to you. Keep posting.....even if it's just thoughts or feelings or a need to vent. This board is a great place to do just that. People here understand. Take care,

Mark

Last edited by michigani; 06-15-2007 at 06:58 PM.

 
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Old 06-15-2007, 10:32 PM   #3
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MYO-029 Clinical Trials

Hello Everyone,
Regarding the MYO-029 Clinical Trials, I'm pretty sure both Phases I and II are complete. I went to the Wyeth website, and it indicated that they were. Also, I read some place in my research that sometimes, Phase I trials become Phases I and II, without a call for additional "recruits", so that's probably why we didn't hear about the Phase II. Hopefully, their analysis will prove to be successful, and they will go on to Phase III. I REALLY hope things work out, as that seems to be the best thing we have going right now. Wouldn't it be wonderful if we could re-build our muscles that are beaking down with daily wear & tear!! Keep the faith!

 
Old 06-25-2007, 06:04 AM   #4
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Re: becker muscular dystrophy

Hello to all.
This is my first posting here.
My son-6 years old-is suffering from muscular dystrophy.
He was considered to be either DMD or BMD for a year and a half.
After visiting Professor Muntoni at the Hammersmith hospital in London he is most likely to have a form of LGMD.We had a second round of examinations,muscle biopsy and a genetic test and results anticipated on July 17th hopefully.
Well in the case of BMD there are two hopes.MYO-029 and the mini dystrophin experiment at the Ohio State University.
Speaking with Steven Wilton he told me that exon skipping will only be for DMD.But lately I read somewhere that research with exon skipping is done for LGMD's also.
Regarding that it will work for cystic fibrosis also I see no reason why exon skipping will not work for BMD caused by a deletion or a duplication because the exon to be skipped is contained in the same gene.Maybe it depends on the introns.
Do you know your exact mutation?It would be a good question to e-mail to Steve Wilton or Judith Van Deutekom.
I made it too long because exon skipping for exon 51 as Judith said will be ''there'' probably in 4 years.
In addition lots of parents with DMD children give Protandim to their boys .
Some of them saw general improvement.
Best to you.

Antonis

Last edited by moderator2; 06-29-2007 at 05:17 AM. Reason: Please do not post websites except as described in the posting policy section titled "How to share information".

 
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