Author Archives: Laura King Edwards

Walking the Path From Here to There

This will be my last post of 2020. But instead of wailing that the new year can’t possibly get here soon enough, I want to end a tough year on a high note. To infuse these troubling times with a touch of optimism, at least in the tiny corner of…

Giving Thanks, Despite Batten Disease

Thanksgiving began as a simple gathering hundreds of years before the invention of football and shopping malls. For the Pilgrims, this special day was about giving thanks for the blessing of the harvest and the preceding year. In modern America, the fourth Thursday of November brings turkey and touchdowns, Turkey…

Batten Disease Changed Our Halloweens Long Before COVID-19

Trick-or-treating’s early history is shrouded in mystery, though a “Peanuts” comic strip immortalized the tradition in 1951. That means that this year may be the quietest for door-to-door activity in nearly three-quarters of a century, with Halloween falling squarely in the middle of a pandemic. Only the boldest costumed…

Good News for CLN1 Disease and a Sprint to the Finish

Last week, Taysha Gene Therapies announced the company has entered into license and inventory purchase agreements with Abeona Therapeutics for ABO-202, an adeno-associated virus (AAV) gene therapy for CLN1 disease (Batten disease). In the longest race, this news is a huge leap forward for children…

When Is It OK to Quit Fighting Rare Disease?

If she were still alive, my younger sister would have celebrated her 22nd birthday today. Instead, Taylor died from CLN1 disease (Batten disease) in September 2018, more than 12 years after her diagnosis. Long before I said goodbye to my sister, I knew all of the work our charity,…

What Can COVID-19 Teach Us About Batten Disease?

Can you remember a stranger year than 2020? I was a college sophomore on 9/11, but while that tragedy mostly united Americans, the COVID-19 pandemic and growing racial tensions have proved divisive. And while neither of these crises directly relates to rare disease, I can’t help…

Batten Disease: Life, Interrupted

The message landed in my inbox just before lunch on Day 61 of the quarantine. I was working from home while making lunch for my 1-year-old son, juggling content strategy with clementines. Shuttling between my makeshift standing desk and Jack’s already messy highchair, I glanced down at my phone quickly,…