Anne-Marie’s CJD progressed rapidly and within 2 weeks of diagnosis she was unable to speak. In those short 2 weeks, she made it very clear that others need to know her story and most importantly, learn from her experience. One of the last things she wrote was a list of trusted individuals that were to be on her Project Team. Each of these friends and colleagues have their strengths to bring to the team, and amm recognized that.
The Project Team is currently working on compiling medical data, information about amm and anything they think will contribute to the learning process. This has included videotaping amm since her diagnosis and asking lots of questions (something that amm always spoke of – asking questions). Although they don’t currently know what the final outcome will be, amm had dubbed it her “docu-drama”.