Posts by: Laura King Edwards

Laura King Edwards

July 29, 2020July 24, 2020

Your Rare Disease Reading List for Quarantine: Part 2

Columns, The Long Sprint - a Column by Laura King Edwards

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 ... Read more

July 22, 2020July 20, 2020

Your Rare Disease Reading List for Quarantine: Part 1

Columns, The Long Sprint - a Column by Laura King Edwards

First in a two-part series. With August around the bend, a summer reading list may seem a little last-minute. But if like much of the world, you’re still spending ... Read more

June 24, 2020June 22, 2020

What Can COVID-19 Teach Us About Batten Disease?

Columns, The Long Sprint - a Column by Laura King Edwards

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 ... Read more

May 20, 2020May 18, 2020

Batten Disease: Life, Interrupted

Columns, The Long Sprint - a Column by Laura King Edwards

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 ... Read more

April 22, 2020May 18, 2020

Rare Disease Therapy Development: Finding a Way Forward

Columns, The Long Sprint - a Column by Laura King Edwards

Gaining access to lifesaving or even life-altering treatments has never been easy for many rare disease patients — including those with Batten disease. But the landscape is changing. What ... Read more

March 25, 2020March 23, 2020

For Many Rare Disease Families, Self-isolation Is Nothing New

Columns, The Long Sprint - a Column by Laura King Edwards

We watched from the dock as sunlight danced on the lake’s surface — a balletic performance for a small but captive audience of one in the quiet cove. Though ... Read more

February 28, 2020February 28, 2020

My Rare Disease Day Challenge to Clinical-stage Companies

Columns, The Long Sprint - a Column by Laura King Edwards

The world will soon celebrate Rare Disease Day. The 2020 edition falls on Feb. 29 — a rare day, indeed. EURORDIS founded Rare Disease Day in 2008 to raise ... Read more

January 22, 2020January 21, 2020

Running to the Finish Line, for Taylor’s Sake

Columns, The Long Sprint - a Column by Laura King Edwards

I miss my sister. Many people in the rare disease community are surprised, even shocked, to learn that I have a full-time job — which, along with my 16-month-old ... Read more

November 6, 2019November 1, 2019

Advancing Clinical Care Recommendations for CLN1 Disease

Columns, The Long Sprint - a Column by Laura King Edwards

A marathon is difficult even for world-class marathoners. The best of the best have rough days, days when they turn in a subpar performance, or even days when they ... Read more

October 2, 2019September 30, 2019

9 Things We Should Know About the Race to New Treatments

Columns, The Long Sprint - a Column by Laura King Edwards

I favor running analogies — even the name of this column pays tribute to the sport. But I’m not the first patient advocate to evoke that ancient sport of ... Read more