ePostcard from London

Published: April 1, 2012  ~   0
By Laura Edwards

Sharon and Brad

My four-part “Notes from London” series wrapped up with the conclusion of the international conference on neuronal ceroid lipofuscinoses (NCL) yesterday, but I received this photo tonight and had to share it. The smiling young man standing with Mom is 21-year-old Brad of New Zealand, who traveled to London with his father for the family portion of the conference and made quite the impression on my mother (read the post here). Brad suffers from juvenile Batten disease, but his personality energizes a room. I know that meeting Brad will be one of the experiences that sticks with my mother forever.

Notes from London: Day Three

Published: March 30, 2012  ~   3
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