Hello to all group members,

I encourage anyone who has not already done so to register with the
Jain foundation.

http://www.jain-foundation.org

The foundation was founded and is run by family members of a patient
with dysferlin deficiency, and is currently trying to organize
clinical trials. They are dedicated solely to research and
development of treatments for dysferlin-deficient MD, and have a
research budget in the millions of $. Currently, they are trying to
decide within the next week whether to go forward with a clinical
trial, and one of the deciding factors is availability of enough
patients to make it worthwhile.

So I encourage you to register withing the next week, if you are a
patient and haven't already done so. Also, pass along this news to
any other patients with whom you have contact, who might not be
group members.

Best wishes,
Brad