Three Years

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.

My Birthday Wish

By Laura Edwards

I’m turning 28 on March 1, and I have just one birthday wish. Please consider making a gift to Taylor’s Tale, the nonprofit organization I helped found in honor of my younger sister, Taylor, who has infantile Batten disease. Your gift will help us find a cure for children like her. Thank you in advance for your support!

To grant my birthday wish via Facebook, click here. Otherwise, you can make a donation using PayPal on our website.

February Events

By Laura Edwards

We have two great events scheduled for February! If you fancy wine or music (or both!) and want to help support Batten disease research in 2010-2011, please consider joining us on Feb. 11 and Feb. 28.

On Thursday, Feb. 11 at 6:30 p.m., join us for a wine tasting hosted by Tryon Distributors at the Rosewood Community Room, located on Providence Road in Charlotte. For a $35 tax-deductible donation to Taylor’s Tale, you can enjoy French wines, indigenous cheeses and chocolate truffles. This exclusive event will be limited to 50 guests, and reservations are required no later than Feb. 8. Learn more about this event here.
A piano playathon will kick off at 1 p.m. on Sunday, Feb. 28 at Ruggero Piano in Raleigh. The piano will be going all afternoon! Stop by at your convenience to enjoy the music, light refreshments and coffee. Admission is free, but donations are encouraged. To learn more, click here.

What Inspires You?

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.

Wine Around the World: Italy

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.

Fat Daddy’s Charity Night

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!

Eat Chicken for a Cure Next Week!

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.

Swine and Cheese

By Laura Edwards

This afternoon/early evening, members of the Beverly Woods East Swim Club and friends raised $1,100 for Batten disease research at Cookout for a Cure, a laid-back affair staged at the pavilion tucked into the trees that ring the pool. The results wouldn’t have been possible without the generosity of our chef, Greg Frye (aka Greg’s Swine & Cheese), who slow-cooked the meat to perfection over a span of more than eight hours (during which he was visited by a curious raccoon at his backyard pit when most of the nation was sleeping), as well as Ed and Cindy Gash and Kelly and Mike Crum.

Greg engineered a feast of hand-pulled pork barbecue, macaroni and cheese, baked beans and barbecue slaw, plus an assortment of sauces to satisfy both eastern and western BBQ loyalists. In addition to meticulously crafted, authentic North Carolina barbecue, Greg is also well-versed in the arts of lowcountry shrimp boils and hot wings.
To learn more about Greg’s Swine & Cheese, email Greg at

Fox News Rising Friday Dance Party

By Laura Edwards

Apparently I’ll do anything for Taylor – including showing off my questionable dance moves on live TV! Thanks to Andre Hairston and everyone from the Taylor’s Tale crew who made the trip over to Fox this morning. Check out our starring role!

Cardio Funk for a Cure is in just over 12 hours. Don’t miss it!