Tater Tots and Camaros

Published: April 28, 2012 ~ 0

By Laura Edwards

Congratulations 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.

One Amazing Kid

Published: April 26, 2012 ~ 0

By Laura Edwards

I know a 13-year-old kid named Jake Everett. Jake is the same age as Taylor and used to go to her school; they’re not classmates anymore, but that didn’t stop Jake from deciding to take on Batten disease, all on his own.

Jake set up a website at www.jake4taylorstale.com. By the end of the first day, Jake had his first donations, including his own. Today is the site’s one-week anniversary. So far, Jake has raised $427; he hopes to raise $1,000 for Taylor’s Tale.

I can’t think of anything more awesome than kids helping kids. That’s why I love the piano playathon for Batten disease, an inspiring event that has grown from a few students playing in their teacher’s private studio four years ago to nearly 200 playing in multiple venues earlier this year. That’s why I could barely contain my emotions the day hundreds of kids at Taylor’s school turned their gym into an endless sea of sparkly pink and purple glitter and cardio crazed their way to raising more than $3,500 for the fight against Batten disease.

As an adult, I’ve found life to be quite complicated at times. Batten disease, and the domino effect it ignited in my family nearly six years ago, sure didn’t make things any easier. But as my mom likes to say, adults could stand to learn a thing or two from the kids, perhaps even more so in times such as these. Because kids just “get it.”

This spring, I asked our board members to write elevator speeches for Taylor’s Tale. In the meantime, I struggled with my own. My first draft sounded nice on paper; to deliver it verbally, though, I’d need to catch a ride to the top of a 200-story building. But Jake gets it:

Why this campaign?
Because Taylor King is a nice girl and Batten Disease is terrible. With enough money we can find a cure.

Yep – that’s a good enough reason for me. I could agonize over word choice all day. I could write something fancy. But in the end, I really just fight Batten disease because it’s terrible and it takes the lives of nice kids like Taylor. And if enough people BELIEVE, we WILL find an answer.

Please help Jake reach his goal of raising $1,000 for Taylor’s Tale! Visit his website at www.jake4taylorstale.com to learn more about his campaign. When you’re ready to give, simply click ‘Donations’ to make a secure online donation. Then, share it with everyone you know to help spread the word about Jake’s efforts and the fight against Batten disease. Thanks for helping this amazing kid save kids like Taylor!

4 TAYLOR

Published: April 23, 2012 ~ 0

By Laura Edwards

On Saturday, I ran the Tar Heel 10 Miler in Taylor’s honor for the third consecutive year.

I awoke to the sound of my iPhone alarm and my friend’s guest room clock playing a heinous duet – I’ve never been able to bring myself to trust a single alarm to do the job pre-dawn – before 5 a.m. I dressed by the light of a single lamp and inked my sister’s name in block letters on my left arm with a purple marker, packed for the occasion. I ate my traditional pre-race breakfast – a bagel with cream cheese and a fruit smoothie – in the dark, silent kitchen. I swung my Explorer’s headlights out onto Orange County’s rural roads before 6 and drove about 30 minutes from my friend’s home in Hillsborough, NC to a parking lot tucked beneath the watchful gaze of the Dean Smith Center and the Kenan-Flagler Business School on the campus of my alma mater, the University of North Carolina. I checked and re-checked my pack for my license, credit cards, health insurance card (it’s never a stretch to assume I’ll get injured), car keys and sport jelly beans. Satisfied, I began the 10-minute walk to Kenan Stadium to join 2,734 other runners for the 7:30 a.m. start, led by 2012 U.S. Marathon Olympic Trials champion Meb Keflezighi.

When the gun sounded, I inched my way around the stadium track amidst the crush of bodies. As soon as I reached the tunnel leading out of the stadium, I took off.

Around mile three, I got awful cramps (I never get cramps after three miles). The course seemed hillier than usual. I wondered if the other runners nearby could hear my breathing. But I kept going.

Over the first five miles, I recorded a 7:50/mile pace. I knew that if I kept it up, I’d smash my personal record (PR) for 10 miles – 1:25:27, recorded in the 2011 Tar Heel 10 Miler – and my previous 10-mile race time – 1:26:10, recorded in the Charlotte 10 Miler in February of this year. And oddly – though physiologically I’m better suited to sprinting – I tend to finish distance races much more strongly than I start them.

Around mile seven, things got a little uglier. My bum ankle (sprained about six weeks earlier and never fully healed) complained. My hamstrings and quads screamed. My lungs burned. I cursed myself for not getting more sleep (I didn’t turn out the lights till after 1 a.m.). And the notorious Laurel Hill – a 0.8 mile climb near the very end of the course that is so punishing, it gets its own separate timing mats at the bottom and top (because scaling Laurel Hill quickly warrants serious bragging rights) – still loomed.

When the first Laurel Hill timing mat came into my field of view, I think I audibly groaned. I wanted to walk. Normally I can run 10 miles (and farther) non-stop without any issues, but I’d really pushed myself for the first eight-odd miles of the race, and I could feel the effects.

At that very moment, I glanced down at my feet; as my eyes traveled downward, I happened to see the message inked on my arm: “4 TAYLOR.”

I churned my legs and arms up that hill. I ran it a good bit more slowly than last year, but I MADE IT. And soon enough, mile marker nine came into view. The end was near! I experienced a wave of emotion at that moment – relief that my exhausted body would soon have water and a cool metal stadium bench, and disappointment that my favorite race in the whole world – and the high I get from running for a cause in which I so deeply believe and for a little girl I love so much, would soon come to an end.

I ran the final mile in 6:28 – my fastest of the entire race.

When I approached Kenan Stadium, I slowed long enough to stuff my sport beans safely into my pack and remove my hat so I wouldn’t lose either during my customary dash to the finish line. As I burst through the tunnel and into the sunlight that soaked the stadium, I broke into a full-on sprint. All of the pain in my muscles was gone, and I was no longer tired. At that very moment, I felt as though I could run another 100 miles.

One hour, 25 minutes and 34 seconds after crossing the start line, I crossed the finish line. I missed my PR by a mere seven seconds – amazing considering the length of the race. I briefly regretted the precious wasted seconds outside the tunnel just before the end of the race, when I slowed to take off my hat and put my sport beans back in my pack.

And then, just as quickly, I dismissed the thought.

I finished 722nd out of 2,735 overall (men and women), putting me in the top 26 percent of the field. Yes – I came agonizingly close to setting a new PR – but I had a fantastic time missing it, raised awareness of Batten disease and honored my little sister, who once told me she dreamed of walking that campus as a student someday.

God built me like a sprinter, but the fight against Batten disease is a long and difficult race. Outside of my finish line dashes, I’ll never stand out in a distance race field, but if my times show anything at all, they show I’m consistent. And I’ll never, ever stop fighting this fight. I’m in it for the long haul, no matter how many Laurel Hills we face.

To honor Taylor and support the fight against Batten disease, I’ll make a donation to Taylor’s Tale’s Miles to a Miracle campaign. Please consider making a gift, too! Click here to visit my page; scroll to the ‘Support My Cause’ section at the bottom to donate. Thank you for your support!

Trading Punches

Published: April 14, 2012 ~ 2

By Laura Edwards

Tonight, Donya – the mother of a 4-year-old little girl – posted the following message on our Facebook page:

I am the mother of Ali, whom is 4 years old. she was diagnosed with Infantile Battens on July 15, 2011. I am writing to you to express my sincere gratitude for all you efforts in raising funds for research with Battens disease. I often feel great despair as i am a single mom trying to raise funds & awareness as to the impact i am making. I praise the Lord as i read all the great discoveries that you have funded for this disease. This gives me great HOPE & i am so thankful for Taylors Tale! God bless you for bringing us one step closer to the CURE waiting to be found!

I don’t believe any two experiences are identical, but nearly six years after Taylor’s diagnosis, I still remember the emotions I battled on a daily basis as I struggled to comprehend our tragedy – and how quickly and dramatically our world shrank as we searched for other families that understood – or at least had the ability to offer some semblance of a map for the dark, cruel world into which we’d fallen overnight.

Six years isn’t a very long time in most cases, but it’s a long time to fight Batten disease, because fighting Batten disease is like getting up every morning, heading straight into a fistfight, losing badly, standing up slowly, staggering into the corner, slumping down on the stool for a quick rest and then stumbling back into the middle of the ring to do it all over again. It’s crazy. But we do it – I do it – out of hope that every once in awhile, I’ll get in a good lick or two, and maybe – just maybe – when I’m all bruised and bloodied, I’ll manage to land a surprise haymaker and take down the disease that dared to take my sister away from me.

Donya, thank you for sharing the impact Taylor’s Tale has had on your own very personal fight with Batten disease. Just five short years before your daughter’s diagnosis, my family received the same shocking diagnosis of infantile Batten disease. The doctor said that nothing could be done and sent us home to make happy memories with my little sister while we still could. But that wasn’t good enough for us.

I’ve taken a lot of shots over the past six years; the road ahead will be more difficult than any I’ve traveled before – and I still haven’t landed that haymaker. But I don’t want any child or family to have to settle for a world in which there are no answers, and as long as I’m still standing, I’ll keep fighting on behalf of children like Ali and Taylor!

To Infinity and Beyond

Published: April 11, 2012 ~ 0

By Laura Edwards

Daniel Kerner always loved the outdoors. He loved to visit the ocean and mountains and feel the warmth of the sun on his face and the wind in his hair. He loved his family and friends. He loved life.

Daniel became an angel on April 12, 2010 – two years ago tomorrow.

I never met Daniel, but my parents and Taylor met him on several occasions, and I’ve shared his story before. Daniel and my sister will always be linked on paper because they formed the bookends of a historic clinical trial in Portland, OR (Daniel came first; Taylor went last). But Daniel’s story means much more than that. And his courage had – and continues to have – an incredible impact on me.

It’s difficult to believe that it’s been two full years since Daniel earned his wings. In a world ruled by Batten disease, it’s easy to lose track of time – and children. So many children are lost (and eventually, all of them; Batten disease is universally fatal). So many children whose hands I’ve held or stories I’ve hugged close to my heart.

It’s amazing how time passes; amazing how the world manages to keep chugging right along after the premature loss of an angel like Daniel – without even missing a beat. But no matter how many anniversaries come and go or how many children we lose, we must never forget. And we must never stop fighting.

I’ll go to infinity and beyond, Daniel – whatever it takes – to beat this monster for angels like you.

I wrote a letter to Daniel on April 13, 2010 – the day after his passing. Read it here.

2012 Tar Heel 10 Miler

Published: April 7, 2012 ~ 0

By Laura Edwards

In two weeks, I’ll run for Taylor in my favorite race of the year, the Tar Heel 10 Miler. The course meanders through the streets of Chapel Hill, NC, and the campus of the University of North Carolina, my alma mater.

I graduated from college nearly eight years ago. Often, I feel as though the time I spent in Chapel Hill happened in another life. So much has transpired since then. And yet, some moments seem frozen in time.

I felt particularly homesick one day during the fall of my freshman year when I received a message from my mom’s email account. “Dear Rar Rar,” it read. “I wanted to send you a message, too. Here goes!” (insert several lines of unintelligible gibberish here) “Love, T.”

I printed that email and posted it on the cork board that hung on the wall over my desk in my dorm room. Every time I moved throughout my college career, the cork board came down and went into a cardboard box and onto the next temporary dwelling. The piece of paper with T’s email survived all of the moves, including the final journey home to Charlotte after graduation. I still have it today.

I used to imagine that my little sister might someday follow me to Chapel Hill – or wherever her dreams led her. Now, I hope that Batten disease does not steal her from us before she reaches the age when kids typically head to college, their entire lives still ahead of them.

Last year, I ran the Tar Heel 10 Miler in 1:25:27 – my personal best for a 10-mile race (I came close to matching it in the Charlotte 10 Miler in February with a time of 1:26:10). I’ve been hobbled by a sprained ankle for the past month, but I still hope to post a strong result on the 21st.

Once again, I’m running in honor of Taylor’s valiant fight against Batten disease. I’ll make a donation to Taylor’s Tale after the race, and and I’m also asking friends to give anything they can in support of my run. I’ll post my results here on Sunday, April 22.

To make a gift to Taylor’s Tale on behalf of my race, visit my fundraising page here, scroll to the Support My Cause section near the bottom of the page and enter your donation amount in the space provided. All gifts are 100 percent tax-deductible. Thank you for your support!

ePostcard from London

Published: April 1, 2012 ~ 0

By Laura Edwards

My four-part “Notes from London” series wrapped up with the conclusion of the international conference on neuronal ceroid lipofuscinoses (NCL) yesterday, but I received this photo tonight and had to share it. The smiling young man standing with Mom is 21-year-old Brad of New Zealand, who traveled to London with his father for the family portion of the conference and made quite the impression on my mother (read the post here). Brad suffers from juvenile Batten disease, but his personality energizes a room. I know that meeting Brad will be one of the experiences that sticks with my mother forever.

Notes from London: Day Four

Published: March 31, 2012 ~ 0

By Laura Edwards

Today marks the end of the 13th International Conference on Neuronal Ceroid Lipofuscinoses (NCL) at the University of London’s Royal Holloway College. That means this is also my last “Notes from London” post.

Mom walked this path from her dorm room to the conference center and back again many a time in the past few days. She submitted her final update to me just before the closing banquet and her final climb up the path.

I learned a lot about the setting for this conference – so unlike the nondescript, cookie-cutter American hotels to which we’re so accustomed, via Mom’s final update.

“I went to breakfast the first day and haven’t been back since,” she writes. “No problem with the food – best porridge ever – but I’ve been trying to catch up on sleep. As for the other meals…this is a college, so the proportions are gigantic and I’ve not suffered for lack of carbs. The traditional “pub” dinner was interesting. Fish and chips (HUGE piece of fried fish! May I have mine grilled, please? What???), mashed potatoes, Toad in the Hole (ah, no).” At the end, they served Treacle Tart, a “very traditional” dessert. “Oh, I’ve had that before – it’s Chess Pie!” Mom said, to which the server responded, “No, it’s Treacle Tart.” Last night’s theme was curry – curried chicken, curried lamb, curried rice, curried veggies. Mom didn’t comment on the curry – but she went out of her way to say she enjoyed the salad bar!

Mom wanted to be on time for this morning’s session highlighting emerging and novel therapies for the various forms of NCL (Batten disease), so she ran up the hill. Most of the therapies focused on infantile NCL (the form that affects Taylor) and late infantile NCL, both of which are caused by deficiencies in soluable enzymes. The following therapies were of particular interest for Mom:

Dr. Mark Sands from Washington University in St. Louis described his recently published project demonstrating the synergistic effect of combining gene therapy and bone marrow transplantation for infantile NCL. The data is incredible, and the work MUST go forward.

Dr. Sandra Hofmann of the University of Texas Southwestern in Dallas presented data for her enzyme replacement therapy project. To date, Taylor’s Tale has directly contributed $230,000 to this specific project. In the coming year, Dr. Hofmann and Dr. Sands will collaborate in order to expand the reach of their projects.

Dr. Steven Gray of the University of North Carolina at Chapel Hill presented a gene therapy platform that may work for multiple Batten disease gene therapy approaches (i.e. infantile AND late infantile NCL). Interestingly, it requires an intrathecal injection – which is a routine, non-surgical procedure with minimal complications. Dr. Gray’s work is very interesting, and as a North Carolina-based non-profit organization, we love that it is happening in our own backyard.

Several experts presented on enzyme replacement therapy for late infantile NCL. This work is very close to clinical trial. They showed videos of the long-haired dachshunds in the canine study (yes – dachshunds, too, get Batten disease). The dogs were in the end-stages of the disease and, of course, very sick. They suffered from persistent myoclonic jerks, mental abnormalities, loss of visual tracking, inability to eat…the list goes on. It painted a heartbreaking picture, and Mom saw many faces turn away from the screen and heard many moans of distress among the audience. And yet – the terrible images on the screen did not represent a Hollywood-manufactured horror film. They represented the very real picture of children with this disease. If it breaks our hearts to see it in an animal, what are we going to do about getting behind the incredible scientists who gathered in London this week and help them end the horrors happening in children like my sister, Taylor?

In closing, I leave you with a final note from my mom, who – as I’ve said many times before – is one of the world’s greatest warriors for these children. We must continue to support the amazing work of the Mark Sands, Sandra Hofmanns and Steven Grays of the world. But we need the magic of people like my mom to help turn their great ideas into the miracle we so desperately need.

I have so much hope for the future. Many thanks to those at King’s College London, the Batten Disease Family Association based here in the UK, and others for organizing this tremendously valuable conference. The 14th International Conference on Neuronal Ceroid Lipofusinoses (Batten Disease) will be held at the National University of Cordoba in Argentina. Best of luck to all of the scientists as they head back to their labs. It is with great hope that I look forward to meeting you all again in Argentina to hear of successes in the battle against Batten. I, and many other families, are counting on you.

Notes from London: Day Three

Published: March 30, 2012 ~ 3

By Laura Edwards

Mom must have looked tired when she walked into the conference center this morning, because a kind woman asked how she was feeling.

“Oh, I’ve been hit by a brick,” Mom answered.

The woman’s concerned look turned to one of horror. “I forget that this is an INTERNATIONAL conference,” Mom writes to me later. Determined mothers cross oceans for their sick children. Apparently, hyperboles do not! 🙂

Today marked the official establishment of the Batten Disease International Alliance (BDIA), counting 46 non-profit family support and research organizations from across the globe among its founding members. Following are some of the new alliance’s goals:

Exchange knowledge/education/support
Disseminate recent findings
Promote collaborations
Identify research gaps and create global resources
Establish standard practice in merit review
Provide joint funding to accelerate patient-oriented research
Provide international voice to governments and organizations to ensure fair, included representation of Batten disease in matters relating to research, support, clinical and promotional activities

After three full days in London, one thing is clear: there is a LOT of good science and several infantile Batten disease projects that have the potential to go to clinical trial in a few short years. These projects deserve – NEED – funding in order to get to clinic. The questions are undoubtedly keeping Mom up even now: How MUCH money is needed? How can WE help make it happen? How LONG will it take? How can organizations like Taylor’s Tale help move the work through the approval process? And, there is always a “could” question – how could we NOT try to move this work along?

“I see Taylor in my mind’s eye,” Mom writes late at night, in a dorm room far away from home. “I see her, and I KNOW that I WILL and I MUST work harder.”

Day three yielded incredible information – and more questions. That is the nature of our war. I’ll leave you with this – the end of my mother’s message to me:

On a lighter note, I met a very special young man, Brad, and his dad, Mark Timms, this afternoon. Brad and his family traveled from New Zealand to attend this joint conference of researchers and families. Brad is 21 and fighting juvenile Batten disease. Brad is absolutely delightful, and his personality reminds me a great deal of my Taylor. He is spunky, witty and very talkative. I said hello and introduced myself. In a split second, Brad responded in my very southern drawl (I think he threw in “y’all” for good measure!), followed by a big laugh. Yes, you are definitely “Mr. Cool,” Brad, and I’ll never forget you!

Now, I still feel like I was hit by a brick – I’m going to bed.

Love,
Mom