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 SITE ISSUES:

UPDATE!!!!!  This site will soon be gone, but hopefully I will find a way to have it hosted and redesigned somewhere else.  Thanks to everyone that has participated on this site and I have copied all users and email addresses from the site database as 10/6/2013.  You will be getting an email from me soon about a possible new site.  If you have any comments please send me an email to the address listed below.

 

Regards,

Mike

 

I AM AWARE THAT THE SITE IS NOT FUNCTIONING PROPERLY AND HAS NOT BEEN FOR SOME TIME, I'M IN THE PROCESS OF TRYING TO GET THE PROBLEMS CORRECTED...UNTIL THEN IF YOU HAVE A QUESTION PLEASE REFER TO THE FORUMS AT CURECMD.ORG OR EMAIL ME AT

bethlemmyopathyatcomcast.net  of course replace the at with @...

 

Thanks,

 

Mike

NEWS UPDATES

Omigapil slated for studies!!!

Please see this link for more info:

curecmd.org/archives/4526#more-4526

For this study to occur we need to raise the funds as stated in the article.  Please click on the following link to donate and make sure to choose Omigapil studies under Program Designation.

npo.networkforgood.org/Donate/Donate.aspx

 

The 2013 semi-annual family conference will be held in Bethesda, MD on July 14th-15th.  Please see curecmd.org/events/family-conference for more info.

New Studies

http://www.cmdir.org/index.php?option=com_content&view=article&id=117&trial_status=1&Itemid=234&lang=en 

Using exon skipping technology in a model system of Ullrich congenital muscular dystrophy

www.muscular-dystrophy.org/research/news/6412

Other Info

First paper published documenting autosomal recessive occurence of Bethlem Myopathy.

www.nmd-journal.com/article/S0960-8966(09)00650-6/abstract

Our email address has changed.  Please use the contact page to send an email to our new address.

Please see the test diagnosis page to find an update on some new information.  I apologize for not updating this site in some time.  The last 2 years have been difficult as the disease has really started to affect my day to day life more and more.

 ____________________________________________________________________________

WHO I AM...

Hi, my name is Mike Newton and in 2006 I was diagnosed with Bethlem Myopathy. I have started this website in the hopes to bring together those of us that suffer from this very rare disease and to help push for a cure and or treatments. This site contains links to current information about the COL6A diseases and a chat forum for users to post comments.

My Journey
Around 1972 my brother and I started showing signs of some sort of disorder. We were primarily toe walking and had limited strength and stamina. Our parents consulted with our pediatrician who referred us to a neurologist. Our first diagnosis was Kugelberg Weilander disease and in 1976 both my brother and I underwent bilateral heel cord lengthening. Our toe walking had become so bad that surgery was a necessity.

 
Follow this link to visit our discussion forum.  You will need to register before posting messages
What is Bethlem Myopathy
Bethlem Myopathy is a rare form of muscular dystrophy.  It is caused by a mutation(s) in the COL6A gene.  The disease is slowly progressive. 
The Website
This website was started in order to help bring together those who suffer from Bethlem Myopathy.  We will be improving the site as time allows.  A special thanks to Objectware Inc. of Atlanta for designing and building this site.
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