I personally am getting ready for our first Batten Conference next week. I know it is going to be a roller coaster of emotions, but I look forward to meeting people and putting some names to faces. I intend to learn as much as I can from parents who are farther along the journey with their kids, and I know this is going to be a rare oppurtunity to have a number of scientists in one place as well. I am curious to learn more about where they are at with research into Juvenile NCL since most of the literature I see is for Infantile and Late Infantile. I also want to brainstorm with others about ways to raise funds nationally. It seems that all the fundraising is in pockets where there are affected kids and the next step is to make people nationally and eventually globally more aware of the disease.
One week until conference
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