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!
What Disability?
Winter Song
Yesterday, I promised Taylor that if it snowed overnight, I would go sledding with her today.
February Events
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.
Taylor’s Tale on Twitter
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
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.
E-Newsletter
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.
Extraordinary Measures
Shortly after Taylor was diagnosed with Batten disease in the summer of ’06, my mom bought a box full of copies of The Cure, the bestselling book about John Crowley and his fight to save his children from a fatal disease. She gave copies of the book to friends and asked them to fight with her. And from that simple act, Taylor’s Tale was born.
Now, the Crowleys’ amazing story will be told on the big screen. Extraordinary Measures, starring Harrison Ford, Brendan Fraser and Keri Russell, opens on Friday, January 22. If you’ve supported Taylor’s Tale and/or followed our story over the past three-and-a-half years, please consider going to see the movie with friends and using it to help share the story of our own journey and fight for a cure for Batten disease.
You can also help support Batten disease research by visiting the movie’s website and casting a vote in support of a video posted by another family who has two children fighting the disease. Click here to visit the Inspirational Quilt and type ‘noah’ in the search box to watch the video. You can vote every day! Thanks in advance for supporting this special family and the quest they share with Taylor’s Tale and our family to find a cure for Batten disease.
For Daniel
There is a special place in my heart reserved for a little boy I have never met.
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