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.


Notes from London: Day One

By Laura Edwards

Yesterday afternoon, Taylor’s Tale’s co-founder, current president and greatest embodiment of the word “believe” – my mom, Sharon King – took off from Charlotte bound for London, England – site of the 13th annual international conference on neuronal ceroid lipofuscinosis (Batten disease).

Transoceanic flights are never easy, but Mom’s proved to be especially draining. Our good friend and fellow board member, Callie, drove her to the airport around 1:30 p.m. EST Tuesday; this morning around 6:30 a.m. EST, my iPhone trilled the arrival of an early-morning email – Mom’s, announcing that she had at last arrived on the other side of the big pond after getting rerouted through our nation’s capital and suffering through a “totally forgettable” overnight sardine imitation in economy class.

Despite her rough night of “sleep” in a sardine can, though, Mom had a busy first day at the University of London’s Royal Holloway College. She quickly stumbled upon the first organizing meeting of the Batten Disease International Alliance. Though she hadn’t been aware of the meeting, the woman at the registration table “knew” Taylor’s Tale and urged Mom to attend the meeting.

Outside of the meeting, Mom also had the opportunity to catch up with some familiar faces.

The venue itself is wonderful – a very old, grand campus (in Mom’s words – kind of “Harry Potter-ish!”) coalesced with a modern conference center, all in an incredibly compact setting. The building was constructed in the 1800s as a women’s college and christened by Queen Victoria. There was a reception in a grand gallery filled with beautiful paintings. Mom commented that the conference is very well attended (sold out, in fact) and that 40-plus family members are expected to join the scientists (well, and hard-core family members like Mom!) on Friday.

More to come soon!

Royal Holloway