Originally Posted by indigogo

Laura - I think I need to do a better job reporting on what I learn as a member of the MJFF patient advisory council; they are doing so much - I think they usually don't go "public" until they've got a finished product. But that doesn't mean that it hasn't been patient tested; I've learned that their patient network extends far and deep beyond NeuroTalk and our known cadre of patient advocates (I know they consult with Greg and Ann Wasson and JeanB); this forum is an important part of that network, but it's only a part.

The good news is that it is difficult to stump them; they are in sync with patient needs; their mission remains research and finding a cure - but, as they work and progress, they are finding that it is difficult to maintain that strict border - the line between research and quality of life is too fuzzy. They are feeling their way carefully, not wanting to take on too much or in new directions until and unless it makes sense within their mission and they can meet the need in a way that is within their standard of quality. At the same time, when they do identify a need that they believe they can meet, they work quickly to do so. We are incredibly lucky we have MJFF.