Notes from London: Day Three

By Laura Edwards

Mom must have looked tired when she walked into the conference center this morning, because a kind woman asked how she was feeling.

“Oh, I’ve been hit by a brick,” Mom answered.

The woman’s concerned look turned to one of horror. “I forget that this is an INTERNATIONAL conference,” Mom writes to me later. Determined mothers cross oceans for their sick children. Apparently, hyperboles do not! 🙂

Today marked the official establishment of the Batten Disease International Alliance (BDIA), counting 46 non-profit family support and research organizations from across the globe among its founding members. Following are some of the new alliance’s goals:

  • Exchange knowledge/education/support
  • Disseminate recent findings
  • Promote collaborations
  • Identify research gaps and create global resources
  • Establish standard practice in merit review
  • Provide joint funding to accelerate patient-oriented research
  • Provide international voice to governments and organizations to ensure fair, included representation of Batten disease in matters relating to research, support, clinical and promotional activities
After three full days in London, one thing is clear: there is a LOT of good science and several infantile Batten disease projects that have the potential to go to clinical trial in a few short years. These projects deserve – NEED – funding in order to get to clinic. The questions are undoubtedly keeping Mom up even now: How MUCH money is needed? How can WE help make it happen? How LONG will it take? How can organizations like Taylor’s Tale help move the work through the approval process? And, there is always a “could” question – how could we NOT try to move this work along?
“I see Taylor in my mind’s eye,” Mom writes late at night, in a dorm room far away from home. “I see her, and I KNOW that I WILL and I MUST work harder.”

Day three yielded incredible information – and more questions. That is the nature of our war. I’ll leave you with this – the end of my mother’s message to me:

New ZealandOn a lighter note, I met a very special young man, Brad, and his dad, Mark Timms, this afternoon. Brad and his family traveled from New Zealand to attend this joint conference of researchers and families. Brad is 21 and fighting juvenile Batten disease. Brad is absolutely delightful, and his personality reminds me a great deal of my Taylor. He is spunky, witty and very talkative. I said hello and introduced myself. In a split second, Brad responded in my very southern drawl (I think he threw in “y’all” for good measure!), followed by a big laugh. Yes, you are definitely “Mr. Cool,” Brad, and I’ll never forget you!

Now, I still feel like I was hit by a brick – I’m going to bed.

Love,
Mom

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3 Comments On “Notes from London: Day Three

  1. amanda thompson Reply

    Having also attended NCL2012 as a younger sister to a 29yr old jncl sufferer, I really found it helpful. Its so reassuring to know just how much work is constantly going in to research everything. I was also fortunate enough to have the pleasure of meeting Brad & his family, he really is an incredible young man! The whole weekend has been fab 🙂

    1. Member Laura King Edwards Reply

      Amanda – thank you so much for sharing your thoughts on the conference and for reading my blog! I know you’re an incredible sister; keep up the fight! By the way, my mom got a picture with Brad before leaving London and shared it with me on her way home to the U.S. – check out tonight’s post! 🙂

  2. [...] for the family portion of the conference and made quite the impression on my mother (read the post here)... writethehappyending.com/2012/04/01/epostcard-from-london

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