Every Day Should be Bryant Graeber Day

Published: February 1, 2014 ~ 3

By Laura Edwards

Yesterday, the Harris Family YMCA, my neighborhood gym, celebrated Bryant Graeber Day when Bryant, the Y’s friendly greeter, welcomed his one millionth guest.

I run 20 to 30 miles a week and log most of my miles outdoors, but when bad weather strikes or the weight machines call my name, I head to the Harris Y. And on many of my visits to one of Charlotte’s busiest gyms, I’m greeted with Bryant’s beaming face. Whether I’ve had a bad day or fought 10 people for a parking spot in the congested lot, Bryant’s optimism can make all my worries melt away.

Bryant, like my sister Taylor, was born with a lysosomal storage disease, a rare, inherited metabolic disorder that results when the lysosome – a specific part of the body’s cells – malfunctions. People with lysosomal storage diseases are usually missing an essential enzyme needed to break down fats, sugars or other substances. Bryant has MPS1, which causes the unwanted buildup of sugar in every organ of his body.

When Bryant was 14, he and nine other teens participated in a clinical trial for enzyme replacement therapy (ERT) at UCLA. The therapy Bryant received got FDA approval four years later. It’s not a cure, but the therapy Bryant continues to get weekly slows the progression of MPS1, improving his quality of life and extending his life.

To Bryant, I’m just one of thousands of Harris YMCA members he’s greeted over the years. Because he has a kind heart and a real love for what he does, he treats me as if I’m his only guest every time I come through those doors. But my husband, John, who worked at the Y for more than a decade, developed a real friendship with Bryant. My mom, Sharon, the fearless leader of Taylor’s Tale, built a friendship with Bryant’s mom, Melissa, like herself a tireless advocate for the rare disease community and treatments like the one Bryant received – treatments the world’s great scientific minds can conjure yet our system as it exists today too rarely allow to come to fruition to help the people who so desperately need them.

Bryant’s life is a miracle, but if we committed to doing more with the science we already have, stories like Bryant’s would become more commonplace. I think every day should be Bryant Graeber Day, and I hope the light he brings to the world each and every day serves as a reminder of why NO disease is too rare to get our very best fight.

Read a Charlotte Observer article for more on Bryant’s story

Question: Do you work out at Charlotte’s Harris YMCA? If so, have you ever been greeted by Bryant Graeber? How has he changed your life? Let me know in the comments below.

Note: Taylor’s Tale has supported the development of enzyme replacement therapy for infantile Batten disease at the University of Texas Southwestern. Click here and scroll to the end to learn about past grants in 2007-11.

Crunch Time

Published: November 2, 2013 ~ 1

By Laura Edwards

Two short weeks from now, the finish line of the Thunder Road Half Marathon will be behind me. After five months of training and countless lessons about my sister’s dark world, it’s hard to believe that it’s almost here – and that once we cross the first timing mat, the journey of a lifetime will be complete in about two hours’ time.

We’ve gotten some great media coverage and have more on the way. If you live in N.C., pick up a copy of the November issue of Endurance Magazine. Taylor’s amazing story of courage on the race course made the cover! Click here for a note from the editor about the article. The South Charlotte Weekly ran a nice article a few weeks ago. The Charlotte Observer will print a story about our upcoming race tomorrow. We have more TV coverage on the way as well.

Wednesday night just before 10:30, Andrew and I embarked on a 4.11-mile run on the twisty streets of our neighborhood. Encumbered by the cul-de-sacs, speed bumps and rumble strips that have accompanied so many of our training runs, we checked in at a 9:43/mile pace. When my friend and guide dropped me off at my mailbox at the end of the run, I didn’t have a scratch on me and had two healthy ankles – both good signs. I haven’t fallen since my crash landing in mid-August – still my only accident throughout five months of training for Thunder Road. But as I read and reread the stats for our run, I knew I wanted to get FASTER.

10-mile run

This morning, Andrew and I headed to an office park area south of our neighborhood – the site of my longest blindfolded run to date – for just our second daytime run. I strapped on my new Camelbak water bladder pack; crowded water stations aren’t the place for a blindfolded runner, and the pack is a great solution for my hydration needs and all of the other random things I need for a long run (license, health insurance card, Shot BLOKS, etc.).

I wanted to run 10 miles today. The last time we went to the office park, we ran up and down one road that has light traffic on Saturday mornings, hills to train for Thunder Road (not known for being flat) and a chance to practice our turns. Andrew asked me if I thought I’d get bored running the same stretch for 10 miles, to which I responded, “It makes no difference to me!” After all, when you’re blind, the scenery’s all the same.

Running in a dark world as the fog lifted to reveal a bright, sunny day in Charlotte, I could have let my imagination take me wherever I wanted to go. But I stayed grounded, both for safety and to remember every moment of what may have been the last time I put on a blindfold before race day. I felt the sensation of cars as they passed, even though they moved to the center lane to give us room (we didn’t have any encounters like the first time we ran on that road, when a driver in a Porsche flew by and scared me so badly that I jumped into Andrew and almost knocked him over). I felt the “corrugated” texture of the bridge of the interstate beneath us and asked my guide to help me avoid the painted white lines on the road, because they felt slick.

Andrew 10-mile run

I also heard the voices of other walkers and runners. Andrew narrated their reactions to the crazy blindfolded girl wearing a purple backpack, most of which began as shock, then changed to slow recognition and finally a big grin and, sometimes, a thumbs up or a wave. We stopped to talk to two of the runners, one of whom teaches at The Fletcher School, the school Taylor attended for six years. I didn’t realize until later that without even thinking about it, I removed my blindfold long enough to say hello – which Taylor couldn’t have done. It felt like the polite thing to do, but when I pull that blindfold over my eyes, I really do want to blind myself – to experience my sister’s world and to remove all of the privileges that come with being sighted. I don’t intend to take off the blindfold at any point during the race. I’ve solved the water station issue, but more recently, I’ve thought about awkward things like restroom breaks, and whether or not I can skip them for 13.1 miles. I can hold it for 10. I think I’ll just force myself to hold it for 13.1.

Andrew and I reached our goal, after all. We logged 10 miles, my longest blindfolded run by far. We hit about an 8:45/mile pace, good for 1:27:42 even with a couple of stops for SHOT Bloks and the quick visit with Andrew’s friend from Fletcher. My PR for ANY 10-mile run is 1:20, set at the Tar Heel 10 Miler this April. So I feel great about what we accomplished this morning!

I’ll share a secret with you, too: for a brief period of time during today’s run, Andrew cut me loose. I ran down the center of the quiet street, the bungee cord that is my lifeline coiled up in my left hand, my guide just a few steps away. I picked up my speed, and I felt free as a bird. During those fleeting moments, I felt my sister’s presence. And I didn’t fall.

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.

Join the Taylor’s Tale team and help us turn Thunder Road purple for Taylor! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, stay tuned for details about the official Taylor’s Tale cheer station on the course! Contact me with any Thunder Road-related questions.

My Greatest Achievement

Published: February 29, 2012 ~ 2

By Laura Edwards

In the spring of ’82, the Charlotte Observer ran a short article on my mom – who, at 24, had just been elected to lead the Junior Committee of the Charlotte Symphony Women’s Association and had her first baby – me.

The story almost didn’t happen; I had brain surgery when I was a few weeks old, and we spent a lot of time at the hospital. But the paper’s society columnist, the late Grace Hamrick, insisted. After rescheduling several times, she finally arrived at my parents’ house in the suburbs one day in April with a notepad and a camera.The Symphony’s Junior Committee, of course, would be just the first of many leadership posts for Mom. And Grace Hamrick’s visit to our house that spring day in ’82 would not be my last story with the paper.

Tomorrow is my 30th birthday – a day I’ve dreaded for nine years. At 21, I dreaded 30 because 30 sounded old. At 25, I dreaded 30 because 30 sounded like the right age to start having kids, and I couldn’t imagine taking that next step. And lately, I’ve dreaded 30 because I haven’t made it through quite as many of the items on my list of childhood/young adult dreams as I would have liked. These past few nights, I’ve climbed into bed and thought about the trips I haven’t taken (New Zealand, Alaska), or the novel I never finished (the first 180 pages have hibernated on my hard drive and several CDs for the past eight years) or the art that dwindled from childhood dreams of drawing for Disney to occasionally doodling on scratch paper during a meeting here and there, or the athletic career that could have been something more if I’d had the self-confidence in high school or been injured less often in high school, college and the years to follow.

When I get down, I try to remind myself that my family got dealt a crushing blow two short years after I finished school – hardly enough time to accomplish all of my lofty goals. That we didn’t sit back and allow Batten disease to destroy us without a fight. That I co-founded a non-profit organization that has raised more than $300,000 for the cause. That while my body didn’t let me go as far as I wanted in soccer, I turned myself – a natural sprinter – into a distance runner and spent the latter half of my 20s racing in my little sister’s honor. That while I haven’t finished my book, I became a storyteller for children like my little sister on a global scale. I try to remind myself that all of that is worth something; that we cannot always choose what happens to us in life, but we can choose how we act on it.

And, if that isn’t enough, I remind myself that children with infantile Batten disease don’t live to celebrate their 30th birthdays. That I’m not the only one with big dreams. And that if I can somehow help rewrite the rest of the story for future Taylors, that will be my greatest achievement.