Dear Families, I pray this email finds you and your loved ones well. My & Paul's resolve to go on, even though Joshua has passed, is stronger then ever.

This email is going to be a very forthright call to action, but there is no other way I can say this. The science that was presented to many of you in MN this last July will be going to clinical trial. I cannot stress the importance of your involvement with CMDIR registry & the Natural History Involvement any more clearly.

These components collectively are paramount in getting approval for clinical trials. We are a rare orphan disease community and our only strength is in numbers. We MUST have your involvement as this will allow us to present to many entities and Philanthropic donors. If you are not registered with me, Please go to CMDIR today & send me your updated contact info to info@joshuafrase.org. If you have tragically lost your child you can still register. In my data base, I have 259 families. There are many families that we have lost contact with, so we need everybody's help to gather the troops. I see 123 members in this group alone, and only 36 CNM & 18 MTM families have registered with CMDIR? Please Register NOW! Here is a list of how you can help:

CMDIR registry (even is your child has passed) - not a lab or a bank just information. www.CMDIR.org

Natural History Study - Jim Dowling's
studyhttp://sitemaker.umich.edu/dowling.lab/cnm_mtm_rm_natural_history_study