We are in the process of planning for next year's Connect conference (already!) and I would really appreciate some feedback from some of you who attended the conference in Denver this year. So, for the first time, we ran a full-fledged scientific conference in parallel with the Connect conference--although there were some joint sessions, the majority of the scientific conference was separate and was meant to be a forum where scientists could communicate with one another (although anyone could attend the scientific sessions). This was an experiment this year--we've received very good feedback from the scientists about the content of the scientific sessions, but we are concerned that a lot of you parents missed the talks on advocacy and PPMD's research program and agenda because we ran those sessions in parallel.
So, what did you think? If you have any feedback or suggestions, we'd love to hear it.
From a researcher's point of view, I thought the previous format had some advantages. In most cases, the researchers know what the other labs are doing. We hear their presentations at scientific conferences often. The MDA Scientific Conference in Las Vegas in March is a good example. For me, the Connect Meeting presents an opportunity that I don't have very often - communicating our studies to the families and talking with them about our work. Many of us are not MDs and have little contact with people in the DMD community. In fact, my communication with families has increased markedly because of the PPMD conferences.
So, we are thinking about trying something different this year--we want to start the scientific sessions the day before the main conference to focus on immunological issues and cardiomyopathy (sort of hard core working groups) and then have the third scientific session combined with the main conference--that last session would focus on current clinical studies and therapeutics that will enter clinical testing soon. We'll have good summaries of both the scientific sessions and the main conference sessions available so that (hopefully) no one will fee like he or she is missing too much. I appreciated Stan Froehner's comments about having a good forum for investigators to interact with families, but I am hoping that we will still accomplish this with the combined session on clinical trials and near-clinical strategies. David, would this work for you?
We've also thought about doing a breakfast with the investigators to co-mingle families and researchers--that way everyone would have good access in an informal setting to ask questions. Thoughts?