One week until conference

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.


I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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2 comments on “One week until conference
  1. PattiAnnB says:

    Hi – just wondering how the conference went. I’m new to Batten’s and came across your website. Your sons remind me of mine. Wish I could do more than just donate money. LOVE the picture of Brandon with the dolphin. My older son Patrick would be terribly jealous. He loves dolphins, although at 4 years old I don’t know if he would be brave enough yet to do what Brandon did. Best wishes to all of you!

  2. Chris, Wendy, Brandon & Jeremy says:

    Hi Pattiann, will post more about the conference soon, we are still a little punch drunk and travel woozy tonight, but thank you so much for your interest.

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