A Full Life

By Laura Edwards

I worked for one of our local hospitals for eight years. But when I walked through its revolving front door today and took a right down the main hallway, I saw and heard the world inside through different eyes and ears.

When the elevator doors opened on the fourth floor, I turned to the left just as my dad approached me. He had on a suit, but his jacket and tie were missing, and his collar was loose. Without saying a word, he led me into my grandmother’s room, where she was locked in twisted slumber.

The compact room’s mint green walls made the room feel smaller. An ancient Zenith TV hung in the corner, its screen dark. I wondered what my grandmother would watch if she could still follow a story.

Rays of early afternoon sunlight slanted through half-drawn blinds and found an open booklet on the table. A black and white diagram indicated exactly where the stroke occurred.

Her once porcelain skin looked pale. Her white hair, always permed even in the years since she moved to the memory care center, sat limp.

ferryAs I stood near the end of the bed and watched the warm sunlight play on the sterile hospital equipment, my thoughts drifted to a trip to New York City with my grandparents in the summer of 1990. We stayed at the Hilton, where the housekeeper placed my stuffed dog, Brownie, on the pillow on my rollaway cot every morning. We ate chocolate mousse at La Cote Basque and cheese omelets at Mme. Romaine de Lyon. We took a limousine to FAO Schwartz and the ferry to the Statue of Liberty. We stood on top of the World Trade Center, and I thought we were on top of the world.

I wanted to tell her that story, but when I opened my mouth, nothing happened. Instead, I thought about how much I hate brain disease; how much it steals; how much more I would have done when she still knew my name, had I known.

In that same instance, I considered the full life my grandmother lived; the education she received; the things she achieved; the places and things she saw; the children and grandchildren she had. And I thought about how Batten disease is robbing my sister, Taylor, of all of those things; how we have a lifetime of memories with my grandmother, but when it comes to my little sister, Batten disease is stealing those, too.

Run to the Light

By Laura Edwards

My little sister, Taylor, has Batten disease. But that didn’t stop her from signing up for Girls on the Run in the fall of 2008, at the start of her fifth grade year at The Fletcher School. The degenerative disease had already stolen her vision and made it difficult for her to learn new things, but more than anything, Taylor wanted to be a normal kid, and she dared Batten disease to get in her way.

In the afternoons after school, Taylor and her girlfriends met at the track for practice. They developed good fitness habits and learned about teamwork, and they learned to believe in themselves. An upper school student named Mary-Kate stayed after school to practice with the younger girls. When it came time to walk or run around the track, she and Taylor each took one end of a modified jump rope – my sister’s lifeline to a normal experience she desperately craved.

At the last practice of the semester, the girls ran a “practice” 5K around the school track. All of the other girls finished their laps before Taylor and Mary-Kate. Then, as the pair rounded the corner and began their final lap, something magical happened. One by one, everyone on the sideline joined my sister and her sighted guide on the track. Soon, the whole team, plus the coaches and others there to watch the practice, fell into stride with my sister and ran her final lap with her. Girls on the Run Founder Molly Barker happened to be on campus that day to watch practice and meet the girls; she captured this incredible moment in a story for North Carolina’s Endurance Magazine that Gap Inc. also featured in a national campaign last year.

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The team’s first REAL race took place on a chilly morning that December at the Jingle Jog 5K, run on the streets of uptown Charlotte in conjunction with the Thunder Road Marathon and Half Marathon. Mary-Kate told us that Taylor stumbled and fell several times on the course, but that after each fall, she pulled herself up, said she could keep running, and did just that. The tethered pair finished the race in just under an hour. They didn’t run fast enough to win an official award, but watching them cross that finish line remains one of the most moving things I’ve ever witnessed. In that moment, I realized that I could never, EVER give up on my sister or my fight against Batten disease. And when the trees bloomed that next spring, I started running for her.

Taylor and Laura after the Jingle Jog 5K in 2008

Taylor was all smiles after the Jingle Jog 5K in 2008.

I’ve run thousands of miles for Taylor since that day at the finish line of the Jingle Jog 5K. I run the Thunder Road Half Marathon every year and run various other races in Charlotte and elsewhere, from 5Ks to 10 milers, and I’ve shaved more than 30 minutes off my half marathon time since my first go at the 13.1 distance in 2009. But I’ve never come close to achieving the kind of feat my sister accomplished, because I’ve run every race with the benefit of my vision. That’s why, to honor the five-year anniversary of her incredible achievement, I plan to run the 2013 Thunder Road Half Marathon blindfolded. 

I’ll be tethered to my good friend, Andrew Swistak. Andrew is an avid runner and is also on staff at The Fletcher School, where my sister spent six wonderful years and met many guardian angels. I’m grateful to have Andrew’s support as well as the support of the folks at Run For Your Life, who put on the Thunder Road Marathon and Half Marathon.

Andrew will be my sighted guide at the Thunder Road Half Marathon this November.

Andrew will be my sighted guide at the Thunder Road Half Marathon this November.

I’m in half marathon shape now, but I’m not ready to run 13.1 miles – or even 13.1 feet – without my eyes. Have you ever closed your eyes and tried to move around? It’s not easy to run in the dark. I’m in awe of Taylor’s spatial awareness and courage. Andrew and I have some practicing to do between now and Nov. 16, but we’ll be ready.

I’m doing this mainly to raise awareness of Batten disease, but donations to Taylor’s Tale are always greatly appreciated. Currently, Taylor’s Tale and five partners are supporting gene therapy for infantile and late infantile Batten disease at the University of North Carolina Gene Therapy Center. This promising work could lead to treatments for not only rare diseases such as Batten disease, but also more common diseases like Parkinson’s disease, Alzheimer’s disease and ALS (Lou Gehrig’s disease). If all goes well, this work could be ready to go to clinical trial at UNC in just a few years.

Please share this story to help us build awareness! We’re making incredible progress in the fight to save people like Taylor, but we need the support of friends like you to continue to make a difference.

I have a little bit of my sister in me; I believe, and I dare Batten disease to get in my way!

To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

NEW: Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event!

running for Taylor

What Drives Me

By Laura Edwards

Tonight marked the fifth annual meeting of the board of directors of Taylor’s Tale. I slid behind the wheel of my car at 9 p.m. – almost three hours after I pulled into my parking spot and long after a faded sun dipped behind swollen, purple clouds outside the windows in the board room.

Four-plus years have passed since we became a public charity; six-plus years have passed since we declared war on Batten disease. The discussion at tonight’s meeting reflected the incredible progress that has been made since my mom placed a bulk order for copies of The Cure, Geeta Anand’s stunning account of how John Crowley raised $100 million in an effort to save his children from Pompe disease, and distributed them to a small battalion of hand-picked soldiers in a Charlotte living room in the fall of 2006.

IMG_0932Tonight, my mom sat at the head of a board room table to deliver her updates. Some of the faces around the table were the same; some of them were different.

One month ago, Mom attended the first Southeast Venture Philanthropy Summit in Chapel Hill. Other attendees included the Michael J. Fox Foundation, the Gates Foundation and sleek biotech companies of all shapes and sizes.

Three days ago, Mom and two other board members toured the University of North Carolina’s Gene Therapy Center Vector Core – the most advanced facility of its kind in the nation. Down the street, one of the nation’s top gene therapy experts, Dr. Steven Gray, is leading a two-year gene therapy study for two forms of Batten disease that is partially funded by Taylor’s Tale. If successful, the work could lead to a human clinical trial in just a few short years. And as much as we want this for Batten disease, it’s much bigger than that. If Dr. Gray gets this to work, it can treat a lot of people with all types of problems; the principles can be applied to many other diseases – from Parkinson’s disease to ALS (Lou Gehrig’s disease) to Alzheimer’s disease…I could go on. And not only that, but it will be a one-time, low-cost, minimally invasive treatment as opposed to life-long, expensive, potentially invasive treatments that – in many cases – address some of the symptoms but don’t treat the disease.

VectorCenterbannerSeven years ago, I was learning the ropes of healthcare marketing and PR, coaching a girls’ soccer team, covering sports for the local paper and planning a wedding. I had a half-finished young adult novel and figured I’d get to it as soon as the honeymoon ended.

That all changed when I got the phone call.

Google “neuronal ceroid lipofuscinosis” and skim the search results. That’s how I first learned about our new world – and Taylor’s – on July 24, 2006, sitting at my desk at work, with my sobbing mother on the other end of the phone line.

The geneticist who diagnosed my sister said we shouldn’t bother with hope. My response from day one was “Screw that,” but fighting is easier said than done. It’s never been easy.

We’ve lost so much since that day.

But I’m proud of what we’ve achieved. Mom’s reports at tonight’s Taylor’s Tale board meeting embodied all that our team has accomplished and the astounding impact we stand to have.

Our fight began because of our love for one little girl. In those early days, we saw the love and the laughter and the courage that we so cherished about Taylor embodied in all of the children fighting Batten disease, and we fought for them too.

As we forged on, we learned more about the impact of rare disease: 30 million people in the United States – and 350 million worldwide. We realized that we could be doing more with the incredible scientific innovation we already have. We partnered with or endorsed organizations like the Global Genes Project and the EveryLife Foundation and went to Washington to lobby for all those fighting a rare disease.

And as we learned more and more about the wonders of gene therapy and the incredible people behind it, we realized that we could be part of something bigger than we ever imagined.

The possibilities of the immediate future and these next few years are boundless, and my mind races as I think about the impact we – the little group called Taylor’s Tale that my mom and I and a group of women who don’t like to take “no” for an answer founded in a mishmash circle of couches and ottomans and chairs over pimento cheese and egg salad sandwiches – could have – directly or indirectly – on millions of people.

That’s what drives my mind.

But in my heart, I’ll always be driven by my love for “T.”


New Link Between Alzheimer’s and Batten Disease Discovered

By Laura Edwards
1. The body is an intricate network of systems and processes that all, somehow, work together to make us what and who we are – controlling everything from the most basic life functions to what we dream of, who we love and when we cry.
2. Any one of these systems or processes can break or malfunction – in a single moment on a fateful day, over many weeks, months or years or before we are even born, when the body’s instructions are still being written.
All forms of NCL, or Batten disease, fall into a group known as lysosomal storage disorders, a group of about 40 diseases caused by a lack or severe deficiency of a lysosomal enzyme. Lysosomes function like garbage disposals. Basically, waste material is sent to lysosomes to be processed by lysosomal enzymes. If these enzymes are missing, the waste material builds up over time, and the cells get jammed with waste.
So essentially, children who suffer from Batten disease are destined to die young all because of a clogged drain.
3. All of the body’s systems and processes are intricately entwined – and connections exist between many different diseases affecting different groups of people.
Two talented researchers, one of whom is well-known in Batten disease circles, have invented a novel way to approach Alzheimer’s disease – a progressive brain disease that affects as many as 5.3 million Americans. Through a series of experiments, Fred Maxwell, PhD, of the Weill Cornell Medical College, and Peter Lobel, PhD, of UMDNJ-Robert Wood Johnson Medical School, identified the administration of CLN2 (also known as TPP1), the enzyme that is missing in children with late infantile Batten disease, as a promising treatment for Alzheimer’s. To learn more, click here.
We’ll keep tabs on the ongoing development of this important work. In the meantime, I hope that the research and medical communities and the general public will not forget the children who desperately need enzymes like CLN2 to survive their brave fight with Batten disease.