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
Global Genes Project
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
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.
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