One more thing for today. You already know we develop educational materials, but it is important to know how we do this and what resources we utilize. For the last several years, we have are the recipient of a cooperative agreement with the Center for Disease Control (CDC). Our relationship with CDC has been very (very) productive, raising awareness, outreach to underserved and under represented populations, developing materials, the patient self-report registry and very soon, materials to include in the "learn the signs, act early" campaign that will be disseminated throughout the medical care community. It is all about creating awareness for muscle weakness, improving diagnosis, catching children with muscle weakness in the 'net' and insuring they have the best treatment and care available, that they are plugged into a system that will insure they are able to take part in promising clinical trials and treatment and someday making sure no one says "oh yes, i have heard of that, my aunt had ms".
EndDuchenne for every boy...

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