Running Toward Everything

By Laura King Edwards

I’m traveling for races so much these days, it isn’t often that I have a chance to run in my North Carolina hometown. So I looked forward to running in today’s Charlotte 10 Miler, where I figured to see familiar faces and log a fast time on a familiar course.

But life happened, as it tends to do. I lost my father-in-law on Election Day and moved into a new house on New Year’s Eve. I dove into Taylor’s Tale with a sort of conviction I struggled to muster in the past several years. I stayed busy at the office. Needless to say, my feet haven’t seen much action on these fleeting winter days.

But I had a lot of things to fuel me along the 10-mile course on sleepy neighborhood streets and wooden walkways and tree-lined trails winding through urban wetlands. The Batten disease community lost six children in the past few weeks. My own sister’s stubborn star is fading. And as the morning sun lit up the sky in shades of coral and salmon and goldenrod, I inked not one, but two names, on my arm.

Charlotte sunrise

The first was Taylor’s. I’ve been running races for a purpose since I took my first steps at Chapel Hill’s Tar Heel 10 Miler on a spring day in 2009, four months after my blind sister crossed the finish line of her first 5K with her face turned toward heaven.

Charlotte 10 Miler for Taylor

The second was Bridget’s. Twelve-year-old Bridget Kennicott gained her angel wings on February 15 after a brave battle against late infantile Batten disease. I’ll never forget the first time I met Bridget and her family at a Batten Disease Support and Research Association conference in Chicago. Bridget’s dad, Dave, sat behind me at a research session in one of the hotel’s chilly conference rooms. Bridget looked like a sleeping angel in the stroller beside him. When I twisted in my chair to say hello, she took hold of my finger and didn’t let go.

Something my sister used to do.

 

Charlotte 10 Miler for Bridget

A lot happened in the months leading up to the Charlotte 10 Miler. But in this, my first race of 2017, I didn’t think much about the past. Instead, as I weaved through colorful flashes of wicking shirts and race bibs and compression socks on the course this morning, I mostly thought about what I was running toward. 

7:51/mile splits. The finish line. The 35-39 age group (my birthday is in 10 days). My next race, in state 16 of 50. Exciting next steps as an author. A trip to D.C. for rare disease meetings on Capitol Hill. A gene therapy clinical trial for children with Batten disease. My sister’s tempered laugh. An evanescent smile. A radiant soul. One brilliant future realized; another extinguished.

Running toward everything.


Taylor’s Tale Gets a New Look

By Laura King Edwards

Last week, I was thrilled to share the result of a project I’d been working on – this website, and new branding for Taylor’s Tale. Especially at Thanksgiving, it felt like the perfect way to cap a momentous year for our charity.

I find it appropriate that so many milestones have happened in 2016, the 10-year anniversary of my sister’s diagnosis and the founding of Taylor’s Tale. One million patients in North Carolina and their families will benefit from Taylor’s Law. Thanks in large part to Abeona Therapeutics, my friend Steve Gray and his team at UNC, a potentially lifesaving gene therapy treatment for kids like Taylor is headed to clinical trial.

We won’t save my sister’s life, but dreams are still coming true. And if anything, this year has reminded me of the importance of hard work, patience and faith.

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Running for Taylor in 50 States: Utah

By Laura King Edwards

I waited a long time to run for my sister, Taylor, in Utah: two years, or the amount of time since my most recent trip to one of the most beautiful places on our planet.

The last time I visited Utah with my husband, John, for eight days of hiking in Arches, Canyonlands and Capitol Reef National Parks, I was two states into a 50-state running journey. I’d never heard of posterior tibialis tendonitis or suffered a stress fracture. My sister was still walking.

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Global Genes Summit Unites Rare Disease Voices

By Judy Mayer

You might assume that a summit dedicated to rare disease would be a negative experience, perhaps even bordering on tragic. You would be wrong.

The Global Genes RARE Patient Advocacy Summit held in Huntington Beach, California, on September 24-25 illustrates the positive energy that defines the rare disease community. Some people showed up in wheelchairs, while others had masks across their mouths and noses. One teenage girl brought her service dog, and one woman brought her oxygen tank.

While rare diseases create a seemingly endless variety of challenges, the summit participants all share the determination to help others and to leave no stone unturned to improve the lives of rare disease patients.  continue reading →


Running for Taylor in 50 States: New Hampshire

By Laura King Edwards

New Hampshire was special.

Heather and Chris Dainiak established the Our Promise to Nicholas Foundation in 2009, not long after Nicholas, the older of their two sons, was diagnosed with late infantile Batten disease. Heather and Chris promised Nicholas they would work tirelessly to find a cure for the monster stealing his sight and motor coordination and wracking his body with seizures.  continue reading →


The Teacher

By Laura King Edwards

My sister will turn 18 this Friday.

Mom and I traded party ideas once or twice, but the truth is that neither of us wanted to talk about the fact that Taylor can’t eat her own cake, or that most of her friends will be moving into their dorms this weekend and starting their college careers next week. They won’t be around for the 18th birthday party of a dying girl.  continue reading →


What’s Next

By Laura King Edwards

It was a bright hot day in July, and it began full of promise. I was a newlywed and a new homeowner and had a great job. I was the happiest I’d ever been.

The phone rang three times before I answered it. Sometimes I wonder how different my life could have been, had I not taken that call or gone to be with my family in its wake or even moved home to Charlotte after my college graduation.

But I did. On July 24, 2006, I went home to the house where I helped raise my baby sister for the first few years of her life, and I held my parents and I cried and I tried to make sense of watching Taylor die.

My sister didn’t even look sick. continue reading →


Jasper’s Legacy

By Laura King Edwards

Early this morning, I learned of the death of Jasper Duinstra in the Netherlands. When I saw the news on Facebook, my eyes misted and my legs went numb and my heart caught in my throat. But I’m supposed to be strong, so I wiped my eyes and shook out my legs and swallowed the knot, and I stood up at my desk and walked to a meeting.

Jasper’s family is Dutch but briefly lived in the U.S., where they formed fast friendships with other families fighting Batten disease. Jasper’s parents, Bou and Pip, believed in approaching the challenges of Batten disease in the same spirit as their young son’s approach to life – a spirit of enthusiasm and commitment. They established a fund, Jasper Against Batten, to support potentially lifesaving research. continue reading →


Ten Years of Pain

By Laura King Edwards

I’ll never forget my first Batten disease conference.

I was 25 that summer, still young and naive and supremely confident. My sister, not quite 9, had some of her vision and legs that worked and a smile that could light up a room. She could talk and sing and she didn’t have seizures. We’d known about her illness for almost a year, but I just couldn’t picture her getting as sick as the kids whose photos I’d seen on the Batten association site.  continue reading →