Columns

At the end of March, I ran a real race for the first time in 16 months, traveling to the “Horse Capital of the World” for Lexington, Kentucky’s RunTheBluegrass Half Marathon. The contest christened Kentucky as the 24th of 50 states in my nationwide quest to honor…

My sister, Taylor, was diagnosed with CLN1 disease on a hot summer day in 2006, during the “Dark Ages” of Batten disease research, before we knew much about symptom management. So, when the geneticist who confirmed the diagnosis told my parents that doctors couldn’t do anything to help the bright-eyed…

Batten disease took my sister from me, but it didn’t take her love for life. Now, more than two years after her untimely death at age 20, I think a lot about the lessons Taylor could teach those of us struggling with anxiety and uncertainty as the coronavirus pandemic endures.

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…

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…

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…

We all wish we could relive experiences from our childhood — those fleeting moments that turn into minutes and hours and days faster than we can say graduation. My own daydreams often place me on a soccer field somewhere in the southeastern United States, where I can almost smell the…

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…

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,…

Part two of a series. Read part one.  If you’re like much of the world, you’ve spent more time at home than usual in 2020. This is especially true among the rare disease community, where many patients and their families have to take extra measures to avoid contracting COVID-19.