Just a Little Rain

Published: July 25, 2013 ~ 0

By Laura Edwards

Summer always flies after the Independence Day fireworks. August will be here next week, it will be a blur, and autumn will arrive. On Nov. 16, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor the five-year anniversary of my little sister’s first 5K race and support the fight against Batten disease. But I’m not ready to run that race today, which is why, as the last full month of summer drew near, I became concerned that my sighted guide and I last ran together on July 1.

storm quote

But Andrew is as committed to this cause as he is skilled at guiding a sighted person wearing a blindfold on the run. So, despite a steady, warm rain, he climbed up my mountainous driveway at 10 last night, took one end of the three-foot bungee cord that is my lifeline and led me down the hill into my dark, wet world.

We ran approximately 3.1 miles – or a 5K – in the rain. I didn’t take my phone, and I heard a beep that told me my Garmin had died about five minutes after we left, but Andrew told me we averaged about an eight-minute mile or just a little over.

My first six blindfolded runs opened my eyes to a whole new world of sensory experiences. My seventh introduced me to an entirely different one; because I didn’t see the raindrops as they fell from the sky, I felt as if I discovered something new each time one made contact with my skin. I never knew exactly how to describe the way a raindrop feels; I still can’t put it into words, and yet, I understand it on a whole new level.

I would never want to give up my vision. At the end of all of our runs, when Andrew announces that we’ve arrived at my mailbox, I respond by taking off my blindfold. I’ve never tried to say goodbye or climb my driveway or walk inside without my eyes. But a long time ago, Taylor taught me that life is about taking what you have (or don’t have) and making the best of it. It’s about finding beauty in tragedy. It’s about learning to dance (and run) in the rain.

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.

Competition

Published: July 2, 2013 ~ 0

By Laura Edwards

4TAYLOR

After an eight-day hiatus from running, I laced up an ankle brace, slung a three-foot bungee cord around my shoulders and knotted a blindfold above my ponytail. At 10:11 p.m., I met my sighted guide, Andrew Swistak, at the foot of my driveway. I said a silent prayer for no errant curbs or potholes and pulled my blindfold down over my eyes. Together, we took off into the black night for blindfolded run number six.

Andrew avoided tight cul-de-sacs out of respect for my ankle, and my ankle brace did its job. We kept it short and slow, logging 2.56 miles in 25:24 – a 9:53/mile pace. I averaged about an 8:53/mile pace at the Thunder Road Half Marathon last fall, and I know we have some work to do if we want to approach my normal speed. It helps to remember that the Thunder Road course will feel like one of those deserted, flat, two-lane highways stretching into infinity from old Western movies compared to the loopy streets of my neighborhood, which require lots of tight turns and verbal direction from Andrew and unquestionably slow us down.

I’d like to become a faster blindfolded runner. But the truth is that I’m only doing this for people like my sister, Taylor, and when it comes to the fight against Batten disease and other rare diseases, I really don’t care who crosses the finish line first. It’s not a competition.

I’ve always thought that running can be a very lonely sport until race day. But the fight I fight for my sister every day is a team effort. I’ve met a lot of teammates since July 24, 2006 – the day we learned that Taylor has infantile Batten disease. I believe in Taylor’s Tale, the non-profit organization I co-founded in her honor, with all of my heart. On race day, I’ll wear the color purple for Taylor’s Tale, as I always do. Just before I lace up my shoes, I’ll use a purple marker to ink the phrase “4 TAYLOR” down my left arm, opposite my Taylor’s Tale wristband. But whether it’s our name or someone else’s in lights the day kids like my sister no longer have to suffer, I don’t care.

Today, we don’t have a treatment for people like Taylor. Doctors still tell families like mine to take their kids home and love them and make happy memories, because there’s nothing else they can do. A treatment is the only finish line I care about. So until we have one, I’ll just keep on running.

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. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

A Leg to Stand On

Published: July 1, 2013 ~ 0

By Laura Edwards

On June 5, I began training for Charlotte’s Thunder Road Half Marathon with a good friend, Andrew Swistak. Andrew and I could both run a half marathon tomorrow, but on Nov. 16, I’ll run 13.1 miles blindfolded in honor of my little sister, Taylor, who suffers from Batten disease. If you’ve been following my blog for the past month, you know that I twisted my ankle the first time I ran in the dark and that I re-injured it hiking in the mountains of North Carolina eight days ago. The ligaments in my ankles are like old rubber bands, and my worst fear came true not more than 30 minutes after I told Andrew I wanted to give darkness a trial run.

Brooks shoes

But for eight days, I behaved. I swore off running, instead heading to my local YMCA to do free weights and crunches. I stuck a box of extra stroke symposium invitations under my desk at my hospital marketing and PR job, kicked off my shoes and propped up my bum ankle. I sported an ACE bandage, a fabulous summer accessory, and iced several times a day. And when I got home tonight, I said hello to my running shoes. “Oh, how I’ve missed you. Do you have room for a brace in there? We have some catching up to do.”

As I glanced at the clouds dotting the sky, checked the late-night forecast one last time and changed into my neon-colored running shirt, I thought about how my sister, Taylor, can’t beat the symptoms of Batten disease in eight days’ time. I thought about how I trashed my ankles playing soccer because of choices I made, not because of predetermined information in my genes. I thought about how I have wet spaghetti noodles for ankle ligaments, and yet I can still lace up the best hiking boots money can buy, dig my poles into the earth and hike 17 miles round-trip in a day, seeing some of God’s greatest wonders along the way. Taylor can’t hike, and she can’t see. Batten disease ripped my heart out the day I learned its name, but it’s stolen so much more from my sister.

Batten disease wants to steal Taylor’s life. But it hasn’t succeeded yet. Every day, my sister wakes up in her world of darkness, and she finds a reason to smile. I call that courage. Tonight, I’ll summon some of her strength when I wrap my injured ankle and set out into the darkness for blindfolded run number six. And for as long as I’ve got a leg to stand on, I’ll run for her.

Taking Risks

Published: June 24, 2013 ~ 0

By Laura Edwards

Training run number five got off to a late start last night, because my sighted guide, Andrew Swistak, and I both wanted to watch aerialist Nik Wallenda attempt his tightrope walk across a gorge near the Grand Canyon.

Nik Wallenda and his family of aerialists, acrobats and daredevils are famous because of the risks they take and the feats they attempt in order to entertain an audience.

I remember how my stomach dropped when I saw people scrambling like ants on a log up the razor-thin switchbacks to Angel’s Landing in Utah’s Zion Canyon on a hiking trip in 2009. I know I’ll never try anything even close to the performances that are ordinary for someone like Nik Wallenda.

But every time I pull a blindfold over my eyes and join my sister in her world of darkness, I take a risk to gain an audience and honor my sister. I realize that the two situations are not the same. I know I’m not risking my life. I’m never alone, and Andrew was born to lead the blind on the run. But all of the radiology imaging tests and physical exams from over the years don’t lie, and in case I dare forget, the auditory popping of my ankles serves as a daily reminder. Soccer – my first love – shredded the ligaments in my ankles, and I’m running on flat tires. So when I mistimed a curb jump and felt my left ankle go left, then right, then left again the first time I ran blind, on June 5, I suffered a setback.

Soccer’s taken me down this road before, though. As I joked to someone today, I didn’t have a clue what to do when I injured my Achilles tendon in 2011, but I can medicate and elevate and ice and tape an ankle like a pro. Andrew and I can cut our runs short, as we did last night (we logged just 2.61 miles after watching a teary Nik Wallenda twinkle-step the last few feet of his journey). And if all else fails, we can succumb to my ankle and take a short break. We’ve accomplished more in five runs together than I ever dreamed possible.

And like I’ve said before – no matter what happens, when race day arrives, we’ll be ready.

Because it’s for Taylor.

Just Keep Running

Published: June 20, 2013 ~ 0

By Laura Edwards

Last night, I broke out a makeshift blindfold for training run number four with my sighted guide, Andrew Swistak. I ran with my eyes closed for our first three runs, but even squeezing them shut didn’t block out all of the light or provide an experience of total blindness. At 10:28 p.m., Andrew and I took off from my mailbox; after a few blindfold adjustments on the run, we found our stride.

Andrew doesn’t tell me where we are on our runs, though if I guess correctly (which is rare), he’ll tell me. But I run with a Garmin Forerunner GPS watch, so afterward, I can connect it to my laptop and get a map of our route. When Andrew drops me off at my house at the end of the night, I feel like I have a pretty good idea of where we went. But it’s obvious from the Garmin maps that my internal compass is all out of whack. Last night, I thought we made it halfway across our neighborhood, which has multiple sections and over 800 houses. But the Garmin map traced a route that covered just eight short streets with lots of cul-de-sacs (great for practicing turns) in a tight area within half a mile of my house. All I can say is, it’s a good thing Andrew signed up to lead me to the finish line of the Thunder Road Half Marathon on Nov. 16.

We covered 3.79 miles in 40:48, so we lost some speed to the blindfold and all of those switchbacks. My ankle’s still a little balky from that first night, too, but it’ll get better. A lot of people say this is a great thing I’m doing for my sister or believe it’s some kind of sacrifice on my part. But I love my training runs with Andrew. I’ve learned a lot about myself as a runner, and I’ve learned more than I ever imagined I could learn about my sister’s dark world. And I can throw my blindfold in the laundry with the rest of my running duds at the end of the night. I can drink in the beauty of another day when the sun rises the morning after a run. I’m not where I want to be for this run on Nov. 16, but I’m sticking with it. I know what Taylor would do if she hit a bump in the road.

She’d just keep running.

Lights Out

Published: June 19, 2013 ~ 0

By Laura Edwards

Since announcing my intent to run Charlotte’s Thunder Road Half Marathon blindfolded on Nov. 16, I’ve run with my sighted guide, Andrew Swistak, three times. The first time, I started with my eyes open to get a feel for the three-foot bungee cord that will be my lifeline throughout the 13.1-mile race. After about 10 minutes, I closed my eyes. The last two times, I ran with my eyes closed, but even the pale moonlight and occasional street light reminded me that, unlike my little sister, Taylor, I’m not really blind.

Andrew doesn’t know it yet, but I broke out a makeshift blindfold for training run number four. And when he picks me up at the foot of my driveway later tonight, I’ll be ready!

Picking Up Speed

Published: June 15, 2013 ~ 3

By Laura Edwards

On Thursday evening, I sat by my living room window and blogged about blind run number two as wind and rain pelted the glass. Between 8 and 9 p.m., the deluge ended, and a purplish, backlit sky cloaked the drenched tree canopies and rooftops of my neighborhood. And at 10:09, Andrew picked me up at my mailbox for blind run number three.

As with run number two, I closed my eyes as soon as I took hold of my end of the three-foot bungee cord, my lifeline for these sightless runs designed to prepare me to run the Thunder Road Half Marathon blindfolded on Nov. 16. We turned left at the first intersection and climbed a hill that doesn’t look threatening but always makes me wheeze when I tackle it at the beginning of a run. At the top of the hill, we took another left. At that point, I lost my way.

There is a blinking caution light at the major intersection in our neighborhood, on the main road near the clubhouse. When we ran through the intersection, I glimpsed the flashing red light in the black night, even though my eyes were closed, and I knew where we were. I guessed which direction we were headed, because I could feel the grade of the road beneath my feet and know that the road slopes downward away from the clubhouse and back toward my house. Otherwise, I didn’t have the slightest idea where we were throughout the entire 4.56-mile run. To this day, I marvel at how a blind person can navigate this wide world, with all of its dangers and obstacles, without the gift of sight. I’ve lived in my neighborhood for more than seven years; I’ve likely run the equivalent of over 1,000 miles on its streets; and yet if Andrew left me on the side of the road in the middle of one of our runs and told me to make my way home without using my eyes, I couldn’t do it, at least not now.

Despite the fact that my spatial awareness isn’t where I would like it to be, I’ve got plenty of time for that. Plus, we improved our pace by more than 90 seconds, dropping to a 9:42 mile. I’d still like to get to somewhere in the neighborhood of a 9:00 mile for longer distances, based on the fact that with my eyes, I average in the mid-7:00 range for middle distance races (i.e. 10Ks) and low to mid-8:00 range for long-distance races.

Thanks for joining Andrew and me on the road! Read on to learn about our cause and how you can get involved.

Finding My Sea Legs

Published: June 13, 2013 ~ 3

By Laura Edwards

This fall, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor the five-year anniversary of Taylor’s first 5K, raise awareness of Batten disease and support the gene therapy research Taylor’s Tale is co-funding at the University of North Carolina Gene Therapy Center. Last Wednesday, I celebrated National Running Day by going on my first trial run with my sighted guide, Andrew Swistak. Six days and one twisted ankle (mine) later, I felt ready for round two.

Shortly before 10 p.m., I wrapped my bum ankle and met Andrew at my mailbox with our lifeline, a three-foot bungee cord, draped over my shoulders.

Last week, I ran sighted for about 10 minutes to get used to the feeling of being “connected” to someone, and I practiced running with my eyes closed on a middle school track before we headed out into the unmarked, obstacle-riddled world.

This week, I closed my eyes as soon as I felt Andrew’s grip on the other end of that bungee cord. “Let’s go!” I said. I felt none of the roller coaster sensations I experienced when I closed my eyes at the beginning of our first run.

We ran 5.45 miles in 1:01:50 – good for a leisurely pace of 11:21 per mile – including multiple stretches during which we inched our way through a narrow, fenced path, waited for oncoming cars and stopped to step over speed bumps out of respect for my ankle. But we talked throughout the run (I talked about my sister a lot), and my ankle held up like a champ. When Andrew delivered me back to my driveway a few minutes before 11 p.m., long after most of the lights in the windows on my cul-de-sac winked out, I felt the meaning and the magnitude of this run – and our battle for people like Taylor – within every fiber of my sweat-soaked, adrenaline-charged body in the muggy, quiet June night.

Wind, rain and thunder pounded our neighborhood just 30 minutes ago, but all signs point to clear skies by later tonight. If you live close by and happen to be up and about in three or four hours, you might just catch a glimpse of two runners connected by a three-foot bungee cord and a shared mission, cutting through the black night, running toward the light.

I am running the Thunder Road Half Marathon 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.

Today, We Win

Published: June 12, 2013 ~ 1

By Laura Edwards

Today, I tuned into a live webcast of the Recombinant DNA Advisory Committee (RAC) ‘s discussion of gene therapy for giant axonal neuropathy (GAN) on the NIH campus in Washington. The RAC meeting was a big step in the approval process for the GAN work funded by our friends at Hannah’s Hope Fund to make it to human clinical trial later this year; it’s also very important for the Batten disease work Taylor’s Tale is co-funding at the University of North Carolina Gene Therapy Center, because our project is based on the GAN studies.

On that webcast, I watched two amazing scientists explain the science behind their work, answer tough questions and make a strong case for moving forward. I’ve met a lot of experts in the near-seven years since we started this fight, but I know without a doubt that people with GAN and infantile and late infantile Batten disease have two of the best working for them at UNC. Dr . Jude Samulski and Dr. Steven Gray are fantastic scientists, and they understand the world of families like mine. Kids like Hannah and Taylor are in their minds when they’re in the lab, and I think that’s part of what drives them to be so good at what they do.

I also watched two women who are incredible advocates, fundraisers and, yes – mothers – deliver speeches I will never forget. I’ve met a lot of mothers, but I don’t think a rare disease has ever met a tougher opponent than Lori Sames or Sharon King. Though my mom and Lori, Hannah’s mom and founder of Hannah’s Hope Fund, are different in many ways, they are similar in that they looked their child’s rare disease with no known treatment in the face and said, “You will NOT defeat me. I will NOT sit back and let you take my child without a fight.” They refused to “live everyday with the knowledge that the consequence of doing nothing is sure and certain death.” And because of the choice they made, people like Hannah and Taylor have a light at the end of the tunnel.

…live everyday with the knowledge that the consequence of doing nothing is sure and certain death.

I feel honored and privileged to know and work with all of these amazing people. Big things are in store because of their wisdom, dedication and courage. I am saddened by the reality of my own sister’s decline but inspired by the possibilities for the future and our potential to help build a better world for people with genetic diseases. Today, the RAC committee granted our friends approval to march forward in their quest to launch the first human clinical trial for GAN later this year. You can be sure that we’ll be working to make certain Batten disease is not far behind.

I believe!