I hatched the crazy idea to run a half marathon blindfolded for my little sister all the way back in the spring, and I ran blind for the first time five months ago. I’ve never spent this much time training for any race, and I can’t believe the big day is almost here. But in just nine days, I’ll put on a blindfold and run the most important 13.1 miles of my life to honor Taylor’s courage and support the fight against rare and genetic diseases. A lot of you will be part of the effort on race day – as a runner, cheerleader or supporter from afar. With some help from the Taylor’s Tale team and our friends at Run For Your Life, I’ve been tying up loose ends behind the scenes between training runs, media coordination and regular life stuff, like work and sleep. Check back throughout the next week for last-minute details, but the following should provide most of the information you need to be part of the effort on Nov. 16:

If you’re running:

• You have until Sunday, Nov. 10 at 11:59:59 ET to register online here. If you miss the deadline, you’ll have to register at the race expo on Friday, Nov. 15. There is no race day registration. IMPORTANT: on the second page of online registration, under the option that says “Event Groups/Teams,” select “Taylor’s Tale” as your team. Note: if you already registered and did not select Taylor’s Tale, contact me using this form.
• Thanks to the generosity of two donors, we will have the ability to provide Nike Dri-FIT shirts in Taylor’s Tale purple to the first 40 runners who register to run for Taylor’s Tale. If you have officially registered to run, please contact me using this form with your preferred shirt size (men’s sizes only) and the best way to get in touch with you on Friday, Nov. 15. We will establish a pickup location for the shirts. If you cannot coordinate a pickup or are not one of the first 40 runners, please try to wear something purple and help us “turn Charlotte purple” for Taylor on race day.
• If you are running the half marathon, you are invited to join my guide (Andrew Swistak), Dr. Steven Gray of the UNC Gene Therapy Center and me. I will receive an early start time (7:15 a.m.) for safety; the official start time is 7:45. Our estimated pace is 9:00/mile, and we expect to be alone on the course for approximately eight miles before the leaders catch us. If you start early, you will not be eligible for awards.
• If you are running the half marathon, the crowd at the official Taylor’s Tale cheer station will give you one last boost of energy on the final mile, near the corner of Martin Luther King Jr. Boulevard and S. McDowell Street. Keep your eyes and ears peeled for a bunch of people wearing purple and jangling cowbells!
• Optional: remember why you run! Shirts will be screen printed with “Team Taylor’s Tale” and our website on the back. Save a few breaths to tell fellow runners and spectators about Taylor’s courage and our fight against rare diseases.

If you’re cheering: 

• Taylor’s Tale will have an official cheer station sponsored by Michelob Ultra. It will be located on mile 12 of the half marathon course near the corner of Martin Luther King Jr. Boulevard and S. McDowell Street. This is a prime location about one-third of a mile from the finish line. View a course map here.
• Supporters will receive free Michelob Ultra and cowbells.
• Arrive by 8:30 to get settled and ensure that you don’t miss Andrew, Steve and me as we run by en route to the finish line!
• IMPORTANT: Runners will vote on the best cheer station, and the winning station will receive $1,000 to donate to charity! You can help us win $1,000 for Taylor’s Tale and the fight against Batten disease. To learn more about the contest, click here.

If you can’t make it to Thunder Road: 

• Running a race blindfolded to commemorate the five-year anniversary of Taylor’s first 5K is the best way I know to honor her determination in the face of the world’s most tragic disease. But being part of finding the treatment that saves people like Taylor would be the ultimate way to honor my sister and others like her. Even if you can’t make it to Thunder Road, you can be part of the fight to save lives.
• I’m running Charlotte’s Thunder Road Half Marathon to support gene therapy research at the University of North Carolina at Chapel Hill (UNC). We announced funding for this important work on Rare Disease Day this year (Feb. 28) along with a coalition of other non-profit organizations, all founded by families fighting Batten disease. This work holds incredible promise for not only Batten disease, but many other devastating illnesses including Alzheimer’s disease, Parkinson’s disease and ALS (Lou Gehrig’s disease). If funding continues, we could have a clinical trial for kids like Taylor in just a few short years.
• To make a gift and help keep the dream alive at UNC, click here. You can make a gift online or by mail. Taylor’s Tale is a 501(c)3 non-profit organization, and gifts are 100 percent tax-deductible.

That’s it for now, but stay tuned for last-minute details. I hope you can join us on the road!