What Inspires You?

Published: November 20, 2009  ~   0
By Laura Edwards

What inspires you?

For me, it’s seeing people come out in droves to help us achieve our mission, like they did at Fat Daddy’s Bar & Grill in Raleigh on Tuesday night. It’s spending every day in the trenches with people like my friend Katie, who organized the event and believes with all of her heart, like I do, that our dream is within reach. But more than anything, it’s watching my sister Taylor. Taylor makes the ordinary amazing. She is the fuel for my fire; my laughter and my tears; my heart and soul.

Click here to read a beautiful article about why Taylor’s never-give-up attitude has sparked a huge effort to find a cure for the disease that threatens to take her life. Thanks so much to Mary Kornegay for telling the story so well.
Taylor – we’re right here with you, sweetie. We’re sticking in the trenches till this disease doesn’t have a leg left to stand on.

Turkey Trot is Almost Full!

Published: November 17, 2009  ~   0
By Laura Edwards

The Charlotte Turkey Trot features a great course and is a hugely popular race, year after year. Word has it that registration for this year’s event is about to be closed. If you’re planning on joining Taylor’s Tale for the 8K run or 5K walk and have not registered, please do so ASAP! You can register online at http://www.charlotteturkeytrot.com/. Don’t be a turkey – reserve your spot now to trot in honor of kids with Batten disease on Thanksgiving Day.

p.s. Just as a reminder – we have t-shirts for anyone taking part in the day’s festivities. Send me an email at laura@taylorstale.com with your size and the best way to catch up with you between now and Thanksgiving!

Wine Around the World: Italy

Published: November 17, 2009  ~   0
By Laura Edwards

Many thanks to everyone who joined us at Terra Restaurant for the Italian edition of Wine Around the World for Taylor yesterday. We had a great evening with our guest vintner, Federico Orsi, and restaurateur Thierry Garconnet and his staff. Thanks also to our hostesses – Stacy Jesso, Anne Pipkin, Amy Romeo, Martha Schmitt, Amy Tribble and Linda Weisbruch.

Stay tuned for details about the French and Australian Wine Around the World events! Use your passport or purchase a single-event border pass for just $35. For more details, click here.

Learning to Dance in the Rain

Published: November 11, 2009  ~   0
By Laura Edwards
My mom and dad first met Cindy and Doug Smith of Winnipeg, Canada at a world symposium for lysosomal storage diseases in Orlando, just months after Taylor was diagnosed with infantile NCL in July 2006. Being like-minded fighters fighting the same fight, they’ve stayed in touch ever since.
Fast-forward two and a half years to an evening in early July of this year. My mom had not made plans to attend the BDSRA conference – the annual meeting during which families of affected children get together to support one another and research grants are announced. On this evening, though, Mom had Winnipeg on the line. Doug Smith urged her to attend the conference, telling her that the work of Taylor’s Tale had helped give hope to children like his son.Not long after that night, Mom boarded a plane for St. Louis, where she would witness the awarding of four more grants for INCL research. Another year of hope.
Just a few short weeks ago, Mom got another call from the Smiths. This time, Brandon had taken a sharp turn for the worse.
Brandon passed away in his parents’ arms on Sunday, Nov. 1. He was 8 years old. When I found out that Wednesday, I cried in my office.
In spite of the miles that separate us, Brandon and his family feel like old friends. We share the same fight. And Brandon, like Taylor – like all of these kids – was a fighter. Batten disease is tragic; after the diagnosis, there’s never an easy day. But Taylor always reminds me how to smile, just as Brandon did for his family and all those who knew him. In the words of his mom, Cindy, “He taught us to dance in the rain. Life is not waiting for the storm to pass. It’s learning to dance in the rain.”
Brandon fought till the very end, and I will, too. I’ll fight in honor of his great courage and to bring hope to the children we can still save. We couldn’t do it quickly enough for Brandon, but we’re close. Let his story inspire all of us to keep dancing in the rain.
Click on the links below to read two beautiful articles about Brandon and his family’s fight.

Fat Daddy’s Charity Night

Published: November 7, 2009  ~   0
By Laura Edwards

Just a reminder that Fat Daddy’s Bar & Grill of Raleigh, NC will host a charity night to benefit Taylor’s Tale on Tuesday, Nov. 17 from 5-11 p.m. If you live in the Triangle area and can make it out to Fat Daddy’s that evening, you’ll be supporting the three research projects Taylor’s Tale helped make possible for 2009-2010. Just mention Taylor’s Tale when you place your order, and the restaurant will donate 10 percent of the proceeds from your purchase to our organization.

Fat Daddy’s is a local favorite in the Crabtree Valley area of Raleigh, located at 6201 Glenwood Ave. The restaurant offers everything from custom-built burgers to pool tables and a huge beer selection.
For more information about this and other upcoming events, check out our website or Facebook page. Hope to see you soon!

Turkey Trot for Taylor

Published: November 5, 2009  ~   0
By Laura Edwards

Join us at the Charlotte SouthPark Turkey Trot on Thanksgiving morning for the 8K run, 5K walk or one-mile fun run. Feel less guilty about eating a big meal later that day, and help us spread the word about Batten disease. Email me at laura@taylorstale.com if you plan to run/walk in honor of children like Taylor (who happens to have two 5Ks to her credit!). Include your t-shirt size in your email; we want everyone to wear a Taylor’s Tale t-shirt!

For more information about the race events or to register, visit www.charlotteturkeytrot.com. Hope to see you there!

A Season of Change

Published: November 2, 2009  ~   0
By Laura Edwards

The red and gold hues of fall have become the dominant color in the Charlotte landscape in the few weeks I’ve been back home from our adventure out west. The nights are cooler, and the days are shorter. Last weekend, we headed up to Carrigan Farms north of town for a hayride and pumpkins straight from the pumpkin patch. And yesterday marked one of the most exciting days of the year for Taylor.

Halloween rivals Christmas for the title of “T’s Favorite Holiday,” and she never takes it lightly. The “Is it time to put on my costume?” questions started early yesterday morning and didn’t end until the answer transitioned to “yes.” She was a queen bee – an identify of her own creation and my favorite costume yet. She came bounding down the steps around 5:30 in her yellow and black striped tights, gold Mardi Gras beads, black leotard, glittery wings and fuzzy antennae that bounced with each step she took. Even the pouring rain wasn’t able to dampen her spirits, and we squeezed every last drop out of the 30-minute break in the rain to take her from door to door.
After Halloween, the rest of the year is a blur. Thanksgiving will be here in three weeks, and the malls will be decorated for Christmas shortly if not already. And then, before we know it, 2009 will be only a memory.

Soon it will be four years since our first fundraiser, and though research is in an infinitely better place than it was four years ago, the disease continues to haunt us where it hits hardest – at home. Despite her straight As and bright smiles and a spirit that even a trick-or-treat-trashing rain can’t touch, the disease is within her more than ever before. The brilliant autumn reds and golds – colors she can no longer see – mark yet another season of change.

Three years ago, I wondered if T’s strained night vision would keep her from trick-or-treating. Her vision has left her now, though – and it is the least of my worries. How much longer, I wonder, will she be able to walk the neighborhood streets and ring doorbells of her own power?
The leaves are falling in earnest now, and soon, only bare branches will grace the backdrop of endless sky. And after the last leaf has fallen, and the nights have turned bitter cold, I will be left only with the one word that has carried me through these haunted years: BELIEVE.

Eat Chicken for a Cure Next Week!

Published: October 21, 2009  ~   0
By Laura Edwards

Don’t forget to come out and support Taylor’s Tale at the Cotswold Chick-Fil-A next Tuesday, October 27 from 5:30-8:30 p.m.! Mention Taylor’s Tale when you place your order, and Chick-Fil-A will donate 15 percent of the proceeds from your purchase to our organization.

Proceeds from the Chick-Fil-A Charity Night will support the exciting Batten disease research projects Taylor’s Tale is supporting in 2009-2010; click here for more details.
The Cotswold Chick-Fil-A is located at 4431 Randolph Road in Charlotte.
 

Nature

Published: October 13, 2009  ~   0
By Laura Edwards

John and I just returned from an eight-day tour of what’s commonly known as the Grand Circle – Zion National Park, Bryce Canyon National Park and the North Rim of Grand Canyon National Park. We haven’t been home long enough to be comfortable with Eastern Standard Time, and yet I’m already dreaming of the next trip.

I love to hike, and we did a lot of it – almost 80 miles’ worth – because it’s good for me, gives me a rush, makes me feel alive, and offers a nice view to boot. Sometimes, when I hike for distance or do a trail with a significant change in elevation, my competitive nature kicks in, and what began as a hike morphs into a quest. The harder the trail, the harder I push.
Perhaps I’m reaching here, but in a way, Batten disease does the same thing to me. I couldn’t have gotten a tougher challenge or one closer to the heart. As I jabbed my hiking poles into the high desert sands and climbed out of Fairyland Canyon in Bryce Canyon National Park last Tuesday (elevation change: 2,300+ feet), I thought about the obstacles that lie between me and the cure that could save my sister’s life. And there, in the steep canyon with the thin air, nearly 2,000 feet higher than the highest peak east of the Mississippi, I realized that in one very distinct way, the two challenges are the same: in both cases, I’m standing opposite nature. One stark difference, though, is the view. It’s not much to say that the impossibly blue sky and mysterious hoodoos of Bryce are easier on the eyes than the progression of the disease.
A memorable quote from a book I bought on Grand Canyon National Park comes from a park ranger and is exactly this: “The Grand Canyon wants to kill you.” And that’s exactly why many people try to conquer it each year – traversing the 21-mile trail down from the desert South Rim to the canyon floor and back up again to the alpine North Rim (a trail we did not do this time around but which sits near the top of our “pre-children to-do” list).
Batten disease wants to kill my sister – an effort that wants to kill the rest of us simply because we love her so much. But I’ll say this – those 80 miles over eight days didn’t leave me too weary to face my greater challenge. Back home on the east coast, I simply have to dig my figurative hiking poles into the North Carolina soil, plant my lead foot and keep climbing.