Hope123 came up with this idea on the CAA thread:
I think it's an absolutely brilliant idea. Anyone interested in doing this?
I thought maybe we could see how many people would be interested first. Then we could approach the CAA formally (although of course Jennie and others will be informed of our intentions and perhaps participate in this phase from the moment I post this - so they'll have lots of heads-up time to think about how they will respond to our offer of our services).
It seems a great way to put our passion and expertise to work.
Originally Posted by Hope123
You know, if people really want the CAA literature/ website to change, rather than just posting our opinions here, consider VOLUNTEERING to help the CAA review its website and materials. Perhaps small virtual work groups could be formed, test versions of documents sent out to relevant parties (researchers, patients, advocates, etc.), etc. This, of course, also depends on the CAA's interest/ openness in doing this too. Our limited energy can be put to effective use.
You know, if people really want the CAA literature/ website to change, rather than just posting our opinions here, consider VOLUNTEERING to help the CAA review its website and materials. Perhaps small virtual work groups could be formed, test versions of documents sent out to relevant parties (researchers, patients, advocates, etc.), etc. This, of course, also depends on the CAA's interest/ openness in doing this too. Our limited energy can be put to effective use.
I thought maybe we could see how many people would be interested first. Then we could approach the CAA formally (although of course Jennie and others will be informed of our intentions and perhaps participate in this phase from the moment I post this - so they'll have lots of heads-up time to think about how they will respond to our offer of our services).
It seems a great way to put our passion and expertise to work.