Turn it Purple

By Laura Edwards

Thanks to a West Coast friend, Julie Siebel, and a Charlotte friend and father of two sons fighting Batten disease, Chris Hawkins, for this idea. My mom and I hope you’ll help us get it moving.

Chris will wear purple and run the 5K for Taylor’s Tale at Charlotte’s Thunder Road Marathon tomorrow, but while Julie won’t be able to run with Team Taylor’s Tale, she’ll also be wearing PURPLE in support of our efforts to bring awareness and funding to Batten disease and other rare diseases. Chris asked his friends to use social media to share photos of themselves dressed in PURPLE even if they couldn’t run or cheer at the race.

Thanks for the inspiration, Julie and Chris! I’m asking all of my readers to put on some PURPLE and share a photo with Taylor’s Tale via Facebook, Twitter or both tomorrow, Nov. 16. By turning Facebook and Twitter purple, you can help us support not only kids with Batten disease, but also 30 million Americans and 350 million people worldwide suffering from rare diseases. Then, go one step further. Ask YOUR friends to post a photo of themselves in PURPLE and share the reason behind it.


There are about 7,000 different types of rare diseases, with more being discovered each day. Ninety-five percent of them don’t have a single FDA-approved drug treatment.

We can do better. And it all starts with telling a good story.

That’s it from me until after the race. It’s go time.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Click here for details about the official Taylor’s Tale cheer station at Thunder Road!

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.