Batten Disease News Columns

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

August 26, 2020August 26, 2020

Good News for CLN1 Disease and a Sprint to the Finish

Batten Disease News Columns

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 ... Read more

August 19, 2020August 19, 2020

When Is It OK to Quit Fighting Rare Disease?

Batten Disease News Columns

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 ... Read more

August 7, 2020August 7, 2020

Case Report Describes Rare Case of Newborn Diagnosed With CLN2 Disease

Batten Disease News Columns

A case report has described a rare case of a newborn diagnosed with CLN2 disease, or late infantile Batten disease, after a genetic analysis confirmed a disease-causing mutation in the TPP1 gene. The ... Read more

July 29, 2020July 29, 2020

Your Rare Disease Reading List for Quarantine: Part 2

Batten Disease News Columns, COVID-19 Columns

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 ... Read more