The Cost of Suffering

Published: August 19, 2015  ~   0
By Laura Edwards

Today is my sister’s 17th birthday. She can’t eat her favorite ice cream cake anymore, but my mother ordered a pink and purple ice cream cake anyway. Batten disease does its best to steal everything, but we grin and bear it and do our best to have normal experiences, because that’s what Taylor would do.

Unfortunately, Taylor is spending her 17th birthday in the hospital. After a rough night, she ended up being taken to the hospital by medic late this morning. The doctors can’t figure out exactly what’s wrong. But it’s likely a recent forced change to one of her medications is the main culprit. continue reading →

Rare Disease is Bipartisan

Published: July 28, 2015  ~   4
By Laura Edwards

I don’t talk much about my political views on social media or elsewhere. But rare disease is bipartisan. Rare disease traverses not only politics but also religion, race, gender, age, ethnicity and nationality. Rare disease affects us all.

Today, North Carolina House Bill 823 passed unanimously by a vote of 106-0 in the House. The bill, entitled “Establish Advisory Council on Rare Diseases,” is on its way to Governor McCrory, who now has 30 days to sign the bill into law. continue reading →

Counting Batten Disease in Years

Published: July 25, 2015  ~   5
By Laura Edwards

When I was a kid, Christmas and birthdays and the first day of summer felt different from other days.

But July 24 is just a day. It’s different for me only because it counts the years; it marks the passage of time.

It’s been nine years since the first time July 24 – the day of my sister’s infantile Batten disease diagnosis –  mattered to me. A lot has happened since then; I remember how scared I was in the beginning, when I thought we had a chance to save Taylor’s life. Now I have to live with the knowledge that I’ll lose my sister regardless of what I do. continue reading →

Running for Taylor in 50 States: Sprinting for Hawaii

Published: July 17, 2015  ~   0

World Cup Wins and Batten Disease Losses

Published: July 5, 2015  ~   0
By Laura Edwards

Tonight, the U.S. women could win the World Cup final for the first time since 1999.

I was 17 the last time the American women won soccer’s top prize. In the summer of ’99, I was a high school midfielder with great speed, a long throw and a competitive streak that didn’t match my quiet personality off the field. I idolized the national team players I’d grown up watching and dreamed of playing at the next level. continue reading →

Gene Therapy Trial Paves a Path for Other Diseases

Published: June 25, 2015  ~   0
By Laura Edwards

Today, UNC Health Care announced an innovative, gene transfer-based treatment approach for children with giant axonal neuropathy (GAN). The treatment, developed by researchers led by Steven J. Gray, PhD, is the first of its kind. A clinical trial is now underway at the National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health (NIH).

This is significant news for Taylor’s Tale and the Batten disease community because we’re funding Dr. Gray’s work on infantile Batten disease – work modeled after the GAN research that is now treating children at the NIH. continue reading →

Gene Therapy and a Birthday Party

Published: June 20, 2015  ~   4
By Laura Edwards

Every time I visit Steve Gray and the University of North Carolina Gene Therapy Center, I want to run home and immediately write a blog post and email all of my media contacts and friends in the rare disease community and tell them what’s happening in a lab two hours from my hometown. I want to tell them Steve and his team are going to change the world.

But when I get home, I can’t find the right words, and instead I just scroll through my pictures and reread my notes and wonder how I can possibly feel so inspired knowing we’re too late to save my little sister. continue reading →

#CureBatten Forever

Published: June 11, 2015  ~   2
By Laura Edwards

Celebrities like Mark Wahlberg, Jennifer Garner and Megan Fox are rallying to save the lives of two young girls diagnosed with a rare form of Batten disease. The girls, Charlotte and Gwenyth Gray, are the daughters of Hollywood producer Gordon Gray. Gray is known for movies like “The Rookie,” “Miracle” and “Million Dollar Arm.”

Now he’s trying to raise $10 million to save his kids. continue reading →

Charlotte and Gwenyth Gray: Awareness, but at What Cost?

Published: June 11, 2015  ~   3
By Laura Edwards

By Sharon King

A question mark popped up in my inbox this morning. The message came from a friend wondering why neither Taylor’s Tale or a member of Taylor’s family had responded to the recent release of a website and video from the family of Charlotte and Gwenyth Gray, two young sisters recently diagnosed with CLN6, a form of Batten disease. The story flooded my Facebook feed yesterday. continue reading →