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dysferlin · Dysferlin Deficiency
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Messages 558 - 587 of 587   Oldest  |  < Older  |  Newer >  |  Newest
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558
Thanks I am going to our local MDA tomarrow so I am going to see if they have a support group that we could attend so that we can see that we are not the only...
Roxanne Kraft
trkt04
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Nov 9, 2009
3:09 pm
559
I am glad we have the MDA but my local group is mostly older people or single. There are no young families there. We go to just a regular counselor and it has...
Jennifer Millican
millicanjenn...
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Nov 10, 2009
12:38 am
560
Thanks I'm really going to try a counselor. I think she just doesn't know how to react to this. She is a really great daughter but I think she doesn't fully...
Roxanne Kraft
trkt04
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Nov 10, 2009
3:54 am
561
Hello everybody, It's been a while since I posted anything so I figured I'd reintroduce myself. I'm Bryan Nickell. I just turned thirty and was diagnosed with...
b5sense
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Nov 10, 2009
5:20 am
562
I dont remember if I was completely out of dysferlin or just really low...I do know that the Jain Foundation paid for my genetic test to solidify not only...
Jennifer Millican
millicanjenn...
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Nov 10, 2009
7:20 am
563
This is a difficult thing for all family members, and especially I can imagine for children her age. Having someone impartial like a counseler can really...
Jennifer Millican
millicanjenn...
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Nov 10, 2009
7:22 am
564
Hey Everyone, Thank-YOU so much for all your words of encouragement!! I also Thank-God that I have my children without them I wouldn't have anything to look...
Roxanne Kraft
trkt04
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Nov 11, 2009
2:11 am
565
Hi Bryan, Just a quick comment on your diagnosis. It is possible for Miyoshi to be caused by mutations in other genes besides dysferlin, there are at least...
baw1064
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Nov 12, 2009
6:52 pm
566
Hey Bryan, My doctor at the Mayo Clinic was pretty confident that I had Miyoshi Myopathy too. I had the blood tests and muscle biopsy done and both show that...
DeejLouise
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Nov 13, 2009
12:17 am
567
Hi Folks, My name is Elaine and I'm 35 years old from Ireland.  I wrote on this website months ago and it totally knocked me for six the stories i was reading...
Elaine Byrne
ebd197
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Nov 13, 2009
9:44 am
568
Hi Elaine, My name is Louise and I actually live in Newcastle. My mum and aunt both have limb-girdle muscular dystrophy, but do not have the dysferlin...
Louise Needham
louiseneedham21
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Nov 13, 2009
10:52 am
569
Hi Elaine (and everyone), A little bit about FKRP. FKRP is the gene responsible for LGMD Type 2I. In parts of Northern and Western Europe it's one of the...
baw1064
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Nov 14, 2009
2:39 am
570
At the Jain Foundation conference this past summer, one of the topics discussed at a satellite meeting was how to organize and conduct a natural history study...
baw1064
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Nov 16, 2009
3:42 am
571
I am wondering if any pharmaceutical company would be interest in to any trial that involves couple hundred people where the potential of profits are virtually...
MATHEW anas
vlacas2002
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Nov 16, 2009
4:00 am
572
Matthew, You are correct that a compound that only targets the dysferlin protein probably will not be of interest to big pharma. It is possible that it would,...
Thayer, Joshua
joshtc3
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Nov 16, 2009
4:29 am
573
Josh is very knowledgable about the economics and approval process. I'll just add a little bit to his post. Besides "dysferlin-specific custom therapies" a...
baw1064
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Nov 16, 2009
5:04 am
574
by any means, i don't want to discourage people to come forward and participate to any approach that facilitates a potential therapy or treatment. my...
MATHEW anas
vlacas2002
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Nov 16, 2009
1:29 pm
575
Matt, As I understand it, there may still be a potential for Myoblasts. I know that at least one doctor up in Quebec designed studies back in the 1990s that...
Thayer, Joshua
joshtc3
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Nov 16, 2009
3:36 pm
576
I congratulate you and thank you for your efforts towards a treatment. i dint realize that you were involved in to that extend in trying to help. i think of...
MATHEW anas
vlacas2002
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Nov 16, 2009
4:19 pm
577
Hi Matt, I will check to see if the cord blood study results were published by Dr. Brown's lab at M.G.H.. I believe so. I'll look into it and send you a link...
Thayer, Joshua
joshtc3
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Nov 16, 2009
4:59 pm
578
The publication reference is Stem Cells. 2004;22(6):981-93. Human umbilical cord blood cells differentiate into muscle in sjl muscular dystrophy mice. Kong KY,...
baw1064
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Nov 17, 2009
5:57 am
579
don't want to discount the abilities and the efforts of dr Campbells lab, but it seems to me like reinventing the wheel here? maybe waste of money? ...
MATHEW anas
vlacas2002
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Nov 17, 2009
2:57 pm
580
Matt, Whom exactly are you addressing? Me? Brad? The group? Who is complaining? About what? I'll email you off line once I look at the links. Josh ...
Thayer, Joshua
joshtc3
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Nov 17, 2009
3:45 pm
581
to whom it may concern.. and its Dr. Mendell not cambell. my mistake To: dysferlin@yahoogroups.com From: jthayer@... Date: Tue, 17 Nov 2009 10:44:48...
MATHEW anas
vlacas2002
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Nov 17, 2009
3:55 pm
582
The video is inspirational. Thank you. So, who is complaining Matt? ________________________________ From: dysferlin@yahoogroups.com ...
Thayer, Joshua
joshtc3
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Nov 17, 2009
4:00 pm
583
Matt, Thank you for the Science Daily link. That is very interesting and encouraging in my opinion. Could you explain why you consider what Dr. Mendell is...
Thayer, Joshua
joshtc3
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Nov 17, 2009
4:12 pm
584
A brief description on myostatin, etc. to try to make the discussion understandable to everyone. Myostatin is a protein that is a negative regulator of muscle...
baw1064
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Nov 17, 2009
4:48 pm
585
hey Josh. dont now if you know that accelleron already compleeted phase 1 study for the same or maybe beefed up compounds, as the mda grantees do. that's in...
MATHEW anas
vlacas2002
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Nov 17, 2009
4:59 pm
586
Hi Matt, Thank you for the link to Acceleron. Looks promising, but it is a totally different compound than the Myo-29 study that was conducted by Wyeth, which...
Thayer, Joshua
joshtc3
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Nov 17, 2009
6:54 pm
587
to my understanding (no scientist here), the delivery method is different for different versions of the the follistatin gene. i rather use the soluble fusion...
MATHEW anas
vlacas2002
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Nov 18, 2009
3:16 am
Messages 558 - 587 of 587   Oldest  |  < Older  |  Newer >  |  Newest
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