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.

Global Genes Project

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.


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.

What Disability?

By Laura Edwards
Watch this video about a father-son team in the University of Louisville marching band for a six-minute primer on determination, attitude and love. I understand this father’s dedication because I see it in my parents everyday; I understand this son’s perspective because I see so much of my sister in him.
Everyone has a gift; we must only find the courage to use it.

Winter Song

By Laura Edwards

Yesterday, I promised Taylor that if it snowed overnight, I would go sledding with her today.

This morning, I opened the blinds in my bedroom to find that a thin layer of snow, covered by a thicker layer of ice, had indeed blanketed my backyard. My house is perched on top of a hill that my 4-year-old neighbor aptly named Mystery Mountain, though, and by the time John had shoveled the ice and snow from the curvy mountain pass (our driveway), we were too late to go sledding with T. When we finally arrived at my parents’, she was already exhausted from flying down the slick streets on a sled with my dad and other neighborhood kids and their dads. Instead, I tromped down to the basement with her in my sledding outfit – leggings, warm-up pants, a thermal, fleece jacket and fleece hat – to play Wii bowling. I stood behind her and told her when to release the trigger to send the ball rolling down the virtual lane, and together, we almost beat Mom (who is ridiculously talented at some of the Wii Sports games, including boxing; today, she knocked me out with a killer shot to the kneecap). Just before John and I headed home, T and I played music together – she on her keyboard, I on her electric drum pad. We may not have gotten to fly down the frozen streets on her sled together, but we bowled, and we rocked, and she laughed and smiled. It was a good day.
Later this evening, John and I ate dinner in an unconventional spot – at the coffee table in our great room, by a crackling fire with most of the lights off and the shouts of kids outside, still sledding in the sub-20-degree night air, faint but close. Just as we finished, John happened to glance out the window and discover that it was snowing again – visible only by the flakes floating softly downward in a column bathed in the yellow light of the street lamp. As each flake completed its journey through the warm glow and out of sight, into the cold darkness of our frozen cul-de-sac, the neighborhood kids’ shouts were silenced for a moment, and in their place I again heard T’s laughter. I felt at once sad that I’d missed sledding with my sister and at the same moment intensely grateful for the afternoon we shared together instead. And as the last lonely flake left the light and entered the darkness, I smiled.

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.

Taylor’s Tale on Twitter

By Laura Edwards

Taylor’s Tale is now on Twitter! Follow us to get real-time updates on the search for a cure for Batten disease and how you can get involved. Check us out here.


Holding onto Hope

By Laura Edwards

Check out this article on Noah and Laine VanHoutan, a brother and sister pair from the suburban Chicago area who are fighting late infantile Batten disease.

You can cast your vote for the VanHoutans’ video on the Extraordinary Measures movie website’s Inspirational Quilt. Click here to visit the Quilt, then type ‘noah’ in the search box. You can vote everyday! The winning video will win $10,000 to support crucial research.

E-Newsletter

By Laura Edwards

Don’t forget to sign up for our e-newsletter if you haven’t already! The winter issue will hit inboxes next week. Sign up to receive the newsletter via email or read the first issue here.