For the past 16 years there has been a conference held in Orlando all about metabolic diseases. Through another conference I was introduced to someone who helped organized it, and with his help Mark and I were able to attend for free.
These conferences ar e so important, this is where you get face to face time with researchers who are working on therapies and cures for the various types of Batten disease. We were able to get one on one time with the CEO of the company who is currently working on gene therapy for CLN2. We were able to meet with the Battens Organization to look at ways to include Canada and create more support around the families who are diagnosed. There was also other foundations and families that we got to spend time with, so we could talk about pooling resources and moving ahead research in bigger ways.
Even though it was only 48 hours, we got a lot of networking done and started the ball rolling on some projects we hope to launch in the coming months.