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

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