Hi Cath and Chloe,

My name is alexandre. I am 30 years old and affected by a Bethlem myopathy. Moreover, I am a scientist working in the USA for the NIH on neuromuscular disorders.

I just wanted you to know that many progresses have been done to understand the mechanism of collagen myopathy (a mouse model has been generated in 2003, a first drug has been tested on mice in 2005) and positive results have justbeen published in scientific reviews indicating that at least two molecules could slow or even cure Bethlem / Ullrich myopathies.

So be confident !

Do not hesitate to contact me by mail to discuss about it:
personal email address: amejat@free.fr
professional email: mejata@mail.nih.gov

Wish you the best,

Alex