Batten Disease News Columns

December 22, 2021December 22, 2021

We Could All Stand to Be More Like Kids

Batten Disease News Columns

This will be my fourth Christmas without my sister. Taylor lost her life to CLN1 disease (Batten disease) in 2018, yet Mom still hangs her stocking from the mantle every ... Read more

December 2, 2021December 2, 2021

Cancer Therapy Tamoxifen May Hold Promise for 2 Batten Types

Batten Disease News Columns

A screening of U.S.-approved therapies revealed that tamoxifen, an oral cancer therapy, is able to effectively reduce the accumulation of a fatty molecule called globotriaosylceramide, or Gb3, in cellular models ... Read more

November 17, 2021November 17, 2021

I’m Redefining What Giving My Best Means

Batten Disease News Columns

I’ve run nearly 40 half marathons — two of them blindfolded — but zero marathons. This fact surprises a lot of people, but I know my own story all too ... Read more

October 20, 2021October 20, 2021

Reaching for Life Atop the Great Divide

Batten Disease News Columns

On a cool morning in Wyoming’s Teton Range late last month, I laced up a pair of dusty, well-worn boots and ventured into a glacier-carved gorge called Death Canyon. Having ... Read more

August 18, 2021August 18, 2021

The Next Leg of the Journey

Batten Disease News Columns, COVID-19 Columns

U.S. distance runner Molly Seidel won a bronze medal in Tokyo this month, crossing the finish line of the women’s Olympic marathon third overall in just her third crack at ... Read more

July 21, 2021July 21, 2021

For Families Fighting Batten Disease, Quality of Life Is Critical

Batten Disease News Columns

Doctors, scientists, and patient organizations like Taylor’s Tale — the nonprofit I co-founded to advance breakthrough treatments for Batten disease and advocate for life-changing public policies — invest significant time ... Read more

June 23, 2021June 23, 2021

Life: The Longest Race of All

Batten Disease News Columns

I never ran track. Instead, I worked my legs on the soccer field, using my stamina to cover the pitch as a midfielder and my speed to chase down strikers ... Read more

May 19, 2021May 19, 2021

Why I Run to Fight Batten Disease

Batten Disease News Columns

I’ve written a Batten disease column crammed with running metaphors since 2019, and a nonprofit blog with much of the same for far longer. I’ve run two half-marathons blindfolded and ... Read more

April 28, 2021April 28, 2021

Running for a Greater Purpose

Batten Disease News Columns, COVID-19 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 ... Read more

March 17, 2021March 17, 2021

Soon I’ll Be Racing for Real Again

Batten Disease News Columns, COVID-19 Columns

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. ... Read more

February 17, 2021February 17, 2021

My Sister Is Gone, but She’s Still Teaching Me to Live in the Moment

Batten Disease News Columns

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 ... Read more

December 16, 2020December 16, 2020

Walking the Path From Here to There

Batten Disease News Columns

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 ... Read more

November 18, 2020November 18, 2020

Giving Thanks, Despite Batten Disease

Batten Disease News Columns, COVID-19 Columns

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 ... Read more

October 28, 2020October 28, 2020

Batten Disease Changed Our Halloweens Long Before COVID-19

Batten Disease News Columns, COVID-19 Columns

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 ... Read more

September 23, 2020September 23, 2020

Why the Fight Against Rare Disease Is Like High-stakes Soccer

Batten Disease News Columns, COVID-19 Columns

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 ... Read more