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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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,...
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...
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...
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...
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...
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...
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,...
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? ...
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...
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...
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...
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...
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...
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...
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