Dear John,

My name is Laura and I work for the Jain Foundation. I don't know how
much you know about the Jain Foundation (https://www.jain-
foundation.org/index.php), but we are a non-profit organization whose
primary goal is to hasten the development of therapies for
LGMD2B/Miyoshi through funding research, helping patients get diagnosed
to the DNA level, developing a LGMD2B/Miyoshi patient registry, and
advocating for inclusion of LGMD2B/Miyoshi patients in clinical trials
when the time comes.

The first step to getting help from the Jain Foundation is to register
on our web site at https://www.jain-foundation.org/patients.php. It is
a simple form that asks for your contact information, basic questions
about your disease, and family history. Once we have registered we
will contact you to get further information about your disease and we
may request a copy of your medical records. One of the most important
questions that we ask is whether you have had a test for the amount of
dysferlin protein you make, either through a blood test or on a muscle
biopsy. Based on this information we will determine whether it is
appropriate to send your DNA for mutational analysis of the dysferlin
gene. Dysferlin is the gene that has DNA mutations in patients with
LGMD2B and some forms of Miyoshi Myopathy.

I hope this information has answered your questions. I would be happy
to speak with you directly if you have any further questions. My
contact information can be found on the Jain Foundation web site
(https://www.jain-foundation.org/contact.php)

I hope we at the Jain Foundation can be of assistance to you.

Sincerely,
Laura Rufibach
Director of Research
Jain Foundation - "Orchestrating a care for LGMD2B/Miyoshi"

--- In dysferlin@yahoogroups.com, "John" <bluedestin@...> wrote:
>
> What are the steps to have my blood tested for mutation by Jain
> Foundation? Also, does anyone have information regarding hand
controls
> in cars?
>
> Thanks,
> John
>