One of my favorite topics. I went up to DC to talk at a briefing at the request of PAN and the Alliance for Aging Research ("60 is the new 40", these optimistic people say!) on neurological innovation.

This briefing is one of a series that the alliance is holding to publish a book about aging stats and information. Interesting fact: the baby boomers are turning 60 and eventually (I forget the year), a person will be diagnosed with alzheimer's every 5 seconds.

Anyway, I just wanted to point out that the FDA now has several PD patient consultants. (the third illness, after aids and cancer) to have consultants there. We are also trying to get patients on other FDA advisory committees.

Perry Cohen has been hard at work trying to develop ways to work with the FDA.

The bottom line is - patients are the experts. Not because they are smart or educated, but because they see the whole picture. Everyone else is coming from partial knowledge and a different agenda. Patients or patient advocates (as in the case of alzheimer's) are part of the potential solution.

Before it's all over, it will hopefully be considered a sign of being behind the times or less than fully informed of current practices to not consult or involve patients in solving diseases.

paula