Renewal

Published: March 21, 2010  ~   0
By Laura Edwards

We had a wet winter here in Charlotte. My grass is already a rich, vibrant green, my roses are already coming to life, and the weeping willow we planted in the backyard two summers ago is already stretching its limbs toward the skies after its months-long slumber. Yesterday, we were graced with clear blue skies and temperatures in the mid-70s here in North Carolina. Not even March Madness could keep me, a self-described college basketball nut, indoors.
More than just a physical renewal, spring inspires a spiritual sort of rebirth. As I ran laps around the pond in our neighborhood yesterday morning, my sense of ‘believe’ was stronger than it has been in a long, long time.
Mom, Dad, and Taylor escaped to Charleston for a quick renewal of their own during the middle of T’s spring break this past week. On Friday, what was supposed to be an afternoon departure turned into a walk along the city’s waterfront park and famous Battery that stretched into the early evening hours. There, an 11-year-old girl going through an unimaginable illness and two parents going through an unimaginable pain found solace in the sunshine, the breeze and the sound of gentle waves as they lapped up against the walls of the Battery.
Believe.

3.1 for Garrett’s Wings

Published: March 12, 2010  ~   0
By Laura Edwards

Runners: if you’re looking for a race to run next Saturday, March 20, please consider running in the Run the Creek 5K to support Garrett’s Wings, a charity founded by a Charlotte-area couple who lost their young son, Garrett, to infantile Batten disease in December 2007. The race course features beautiful rolling hills and is appropriate for runners of all skill levels. To register, click here.

Garrett’s Wings provides comfort and non-medical care for terminally ill children and their families as well as support for infantile Batten disease research. To learn more, visit their website.

Dancing in the Stars

Published: March 7, 2010  ~   0
By Laura Edwards

Taylor went to her first school dance on Friday night. Decked out in a sparkly pink and purple top adorned with dream catchers over a denim skirt, chocolate tights and Ugg boots, my sister spent two hours on the arm of her date, Scott. And since parents were strictly forbidden from the school grounds during the dance by the sixth graders, I was the lucky girl who got to spend a Friday evening as a fly on the wall (the only fly in the world that can operate a digital camera and camcorder), there only if Taylor needed help (she didn’t).

Having never attended a dance with a date until my junior prom when I was 17, I got to bear witness, via my much younger sister, the best parts of ‘crushing’ on a boy pre-high school (and all of the attending drama). The smiles on Taylor’s face said everything. There were no teen-charged mixed signals to analyze: she had the time of her life. And there, in the Fletcher School’s cafeteria with ’80s music playing in the background and neon deejay lights painting the air, the fly on the wall was having the time of its life, too – holding assorted cell phones for pre-teens, catching the scenery on camera and bottling up the dream catcher girl’s courage and her date’s kindness for the days to come.

Eat Pizza, Watch Basketball, Help Find a Cure for Batten Disease

Published: March 7, 2010  ~   0
By Laura Edwards

Join us at The Pizza Peel on Saturday, March 13 at 1 p.m. for a special ACC men’s basketball tournament party, or eat at The Pizza Peel anytime between March 12 and March 14. Both are great ways to help support the search for a cure for Batten disease, as The Pizza Peel will donate a portion of its weekend proceeds to Taylor’s Tale.

The viewing party on Saturday, March 13 at 1 p.m. will include a beer bracket tournament! We especially hope to see you that afternoon, but no matter what day you choose, you’ll be supporting Taylor’s Tale. And, you’ll have access to great daily specials regardless of when you decide to drop in that weekend:
  • $1.50 Bud Light and PBR all weekend
  • Half-price bottles of wine on Friday and Saturday
  • $3 mimosas on Sunday
The Pizza Peel is located across from Cotswold Shopping Center in Charlotte. To view a menu, visit the restaurant’s website here.

Today Was a Fairytale

Published: March 4, 2010  ~   0
By Laura Edwards

Thank you to the following people for organizing a magical afternoon this past Sunday at Ruggero Piano in Raleigh: Polly Greene, Susan Burnette, Cree Russell, Dottie Buster, Pamela Tsai, Chris Dobson, Deborah and Richard Ruggero, all of the students who spent a beautiful weekend afternoon making music for Taylor’s Tale, and all of the family and friends who attended.


Thank you also to the piano student and his friend, a cellist, who played a beautiful, impromptu rendition of Taylor Swift’s “You Belong to Me” after learning that it is one of Taylor’s favorite songs. My sister was in the room when this happened. I knew it was coming and made a point to watch her face as the song began.
Often, T will get very quiet and appear to gaze off into empty space, and sometimes, the people around her assume that she’s zoning out. I think that many people forget (or never realize in the first place) that she is blind – which perfectly explains the daydreamy look she gets. Her eyes are beautiful and still have the power to betray the way she feels at any given moment, but mechanically speaking, they have nowhere to look. And when she grows silent, it’s usually because she’s listening. In the absence of visual stimuli, T has mastered the art of picking up even the slightest auditory cues. So when others think she’s ‘zoning out,’ she’s actually 100 percent invested in the moment and is likely more wholly aware of all of its nuances than the sighted people around her.
As the notes of “You Belong to Me” danced from the piano and cello on the stage to where T was sitting in the crowd, it was as if someone had suddenly switched on a light inside of her. Rarely overtly emotional, T instead allowed herself only the slightest smile – but a smile that illuminated her face just the same.
I regret not getting the names of the musicians who brought real happiness to my sister on Sunday. In case either of them happens to stumble across these words, though, I want them to know that if I had been thinking clearly when I thanked them in person on Sunday, I would have said – to borrow from the title of another Taylor Swift song – Today Was a Fairytale.

World Rare Disease Day and the Global Genes Project

Published: February 24, 2010  ~   0
By Laura Edwards

World Rare Disease Day is this coming Sunday, February 28. Please join the Global Genes Project and people all over the world by wearing jeans this Friday to show your support!

The Global Genes Project, an initiative of the Children’s Rare Disease Network, is a grassroots effort that was inspired by one rare disease parent advocate in 2009. Its main goals are to enhance awareness of rare diseases and support the millions of children and adults who are affected by them.
Approximately 7,000 rare diseases affect more than 30 million people – 75 percent of whom are children. Batten disease is classified as a rare disease, which means that it doesn’t garner nearly enough funding for crucial research or support services for affected families. The life of even a single child is priceless, but there are children living with Batten disease all over the globe. Please help us save every last one of them.

New Link Between Alzheimer’s and Batten Disease Discovered

Published: February 18, 2010  ~   0
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.

Three Years

Published: February 10, 2010  ~   0
By Laura Edwards

Tonight marks the three-year anniversary of Chapter One, the event that started it all for Taylor’s Tale. On the night of February 9, 2007, less than seven months removed from Taylor’s crushing diagnosis, my family told our story publicly for the first time to about 160 guests in the home of two very kind friends, Leslie and Bruce Schlernitzauer. As we turned the last pages of Chapter One, the people there to share it with us joined the fight to cure Batten disease by donating nearly $40,000 to the cause. I still remember the feeling of hope that washed over me as the last guests departed and I discovered the extent of the evening’s success.

Three years later, we’re a 17-month old public charity. Seven of the dedicated women who helped make Chapter One happen – who were there starting with the very first steering committee meeting – sit on our board of directors today. The research project that was launched as a result of Chapter One is in its third year of funding and making exciting history in the effort to cure infantile Batten disease. Taylor’s smiles and laughter still brighten the days of those who know and love her. And we are still fighting. Whether you’ve been with us from the very beginning, have stood by us in the past or have yet to write your own chapter of Taylor’s Tale, the mere fact that you’re reading this now helps me BELIEVE for the future.
Click on the links below to read other historical Chapter One-related posts and view photos of the night that inspired a movement.

Global Genes Project

Published: February 9, 2010  ~   0
By Laura Edwards

The Global Genes Project, led by the Children’s Rare Disease Network, has been established to raise awareness of rare diseases that affect children, such as Batten disease, and promote equal access to lifesaving treatments for those children. Learn more here.