I am spending the week in Philadelphia at a meeting of the FARA Therapeutics Symposium and the Collaborative Clinical Research Network (CCRN) in FA. Its pretty nuts hanging out with a bunch of researchers and scientists. Something truly amazing happens when you get all this brain power in the same place and concentrate it on a common goal, its like a little kid burning ants with a microscope...kinda. For example, tonight I was sitting at the dinner table with a bunch of researchers that represent different research and scientific entities around the world and they were talking about phenotypes and enzymes and mitochondria and I got lost very quickly. However, it seems they could go on for hours about this stuff. They get it and they are sharing it with each other here this week. All these ideas from all over the globe are coming together in the same place to share and learn in the quest for a cure.
A great thing for me is to realize that we (the lay people, the passionate fundraisers, the Ataxia community) are a huge part of the process, we are part of the energy that gets concentrated to create the heat that burns the ants...is this metaphor working? An illustration of this point: at dinner I was sitting next to Dr. Miriam Rai, who works in a lab in Brussels, Belgium under the direction of Dr. Massimo Pandolfo. Miriam was telling me about some compounds that she is studying. She gets these compounds (HDAC inhibitors) from Repligen corporation who is operating with money that they received from the grants that were funded through Ride Ataxia II. It was truly rewarding to see that our efforts are being put into action in the laboratory. Team Ride Ataxia and all the grassroots fundraising efforts are what is driving the research! We are a huge part of the solution!