2007 BDSRA family conference

Here it is Thursday night already and I promised an update on our trip to Rochester. Many experienced families told us that we would be overwhelmed at times, we were. They also told us to make the most of our time to talk to other families, we did. Although I think we could have done more of that. The organized sessions were very educational, and I found great comfort in sitting in a room full of men who had been through it or were going through it and knowing that some of the things that I feel are OK. We were fortunate to have this conference overlap with the 11th International Congress on NCL which happens every two years. This is a conference for research scientists to share their findings. We heard about the latest research into INCL, LINCL and JNCL and got to meet some of the people actually doing the research. Many of them were very touched by meeting the children that they are trying to help with their research. I am sure it brings new perspective to coming to the lab and feeding the mice every day. Dr David Pearce is one of the leading researchers and has his own lab at the University of Rochester devoted to Batten Research http://dbb.urmc.rochester.edu/labs/pearce/index.htm.

Wendy and I both gained so much strength by seeing how strong and supportive the other families were and we met some great children and young adults. There were many grandparents, thank you “New” Grandma and Grandpa and many first time conference attendees. The Sibs that we met were AMAZING, what an incredible group of people.

Is there much, much, much more to accomplish? ABSOLUTELY!!!!!!!

Will we accomplish it together? ABSOLUTELY!!!!!!!

Can we do it alone? ABSOLUTELY NOT!!!!!!!!!!!

We need your help, we need you to be advocates for our cause. Tell people about Batten Disease. Tell your friends and family when we do a fundraiser. Participate in any way that you can. Your time is just as important as the money raised.

Above all, pray for the affected families, pray for the people doing the research, pray for a cure.

Thank you for reading.


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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