Hey everyone,

I want to briefly highlight The Jain Foundation, an organization whose
sole purpose is to find a cure for LGMD-2b/Miyoshi Myopathy. Please
note that I am not associated with the foundation. I was diagnosed
with LGMD-2b/Miyoshi 12 years ago, and I now use a powered chair.

The Jain Foundation appears to be the most well-informed organization
regarding LGMD-2b/Miyoshi. The foundation is actively funding numerous
research projects that can significantly benefit us as patients.

The most critical piece of their search for a cure is patient
information. Due to the rarity of our disease, the sample size of
patients (and therefore the information) available is quite limited.

It is extremely important that anyone diagnosed with a dysferlin
deficiency register as a patient through The Jain Foundation's website
(www.jain-foundation.org). This information will allow The Jain
Foundation to assist in definitively verifying our diagnoses and
properly allocating their funds to the research initiatives most
likely to benefit us as patients.

On a personal note, I have registered with them. In addition to
knowing that the research initiatives can benefit from my information,
I find it comforting to know that I am now tied-in to the foremost
authority on dysferlin research. Where our own physicians must focus
on many patients and many diseases, The Jain Foundation has a single
focus.

I am happy to answer any questions related to my personal experience
with The Jain Foundation. Feel free to contact me via email if you are
skeptical or have concerns.

Thanks,
Lary