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!

Tater Tots and Camaros

By Laura Edwards

ourboys 10K 2012Congratulations to Chris Hawkins, the father of two boys fighting juvenile Batten disease, and Jeff McGonnell and Andy Brown, who helped Chris pull off his annual “ourboys” race north of Charlotte this morning in support of the Batten Disease Support & Research Association (BDSRA). I traveled to Harris Road Middle School in Concord to run the 10K, a new option this year in addition to the traditional ourboys 5K.

I broke just about every pre-race rule this time, gorging on tater tots (yum!) at a burger place last night, staying up past midnight and stealing precious minutes of sleep this morning, which meant I ate breakfast just an hour before the start of the race. I didn’t warm up, because catching up with friends at the start line (thanks for coming out, Jill and Matt!) was more fun.

In any case, I went home with a first place medal, winning the 30-34 age group with a time of 48:59 (7:54/mile pace) – good for a new PR for the 10K. I may need to make tater tots part of my pre-race ritual! 🙂

I rarely stick around for awards presentations, but I was one of the last to leave today after getting my medal. Before I walked to my car in the near-empty lot, I spent some time with Brandon and Jeremy Hawkins, the guests of honor.

At 6’2″, Brandon towers over me. He’s headed to high school this fall. When Chris and Wendy Hawkins first heard the words “Batten disease” in 2006, Brandon and Taylor shared the same neurologist. Doctors diagnosed just weeks apart.

Jeremy is a social butterfly; he kept people company while they signed a large photo of the boys or waited for their custom Braille bookmarks, which Brandon created on his Brailler. Jeremy will start middle school in August.

I’ve watched these kids grow up over the past six years; I’ve watched Batten disease steal bits and pieces of them, but I’ve also watched them find joy in the simple things, like their ride in a cherry-red Camaro along the 5K course this morning. Taylor has that gift, too.

To learn more about Brandon and Jeremy or the ourboys race founded in their honor, visit www.ourboysjourney.com.