Running Toward Everything

Published: February 18, 2017 ~ 0

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.

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.

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.

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.

Battling Rare Disease Every Day of the Year

Published: February 29, 2016 ~ 0

By Laura King Edwards

Today is Rare Disease Day, a worldwide movement to raise awareness about rare diseases and their impact on patients’ lives. The effort targets the general public but also decision-makers such as policy makers and health professionals and biotech industry leaders.

I worked on the marketing communications team for a large, integrated health system for eight years. Early in my career, my mentor taught me not to focus too much energy on health awareness months, weeks and days at the expense of more strategic efforts. She said only a few of these movements really resonate with the general public, like Wear Red Day (always the first Friday in February), Heart Month, Stroke Month and Breast Cancer Awareness Month. continue reading →

Why World Rare Disease Day Matters

Published: January 28, 2015 ~ 0

By Laura Edwards

There are a million special recognition and awareness “days.” I worked in healthcare for eight years. Many of the patients and families and doctors and nurses and service line leaders I worked with throughout those eight years had a day that was special to them because it recognized not their disease or condition, but the courage and strength it takes to face the disease each day and the determination and belief in miracles it takes to fight for a better tomorrow. Even if some days are so dark you can’t see what’s coming. continue reading →

Why I’m Still Fighting Rare Disease

Published: December 21, 2014 ~ 2

By Laura Edwards

By Sharon King

I checked on Taylor as she was sleeping this morning. She had the most beautiful and peaceful smile. It was one of those precious moments you remember forever. I wondered what she was dreaming. I often wonder what she feels, thinks, dreams and fears. Batten disease really has a hold on her now, but we still try to give her the most normal life possible. Whatever she feels, thinks and dreams, we pray for happiness and peace for things she may fear. That’s really no different from what any parent wishes for his or her child.

Parents commit to helping their children follow their dreams and giving them the tools to battle their fears. But when your child has a life-threatening, rare illness, parenting takes on a new dimension. Serving as a guide for dreams come true and battling monsters becomes bigger than our children. For many of us, it becomes more about all of the children past, present and future whose dreams and fears include rare disease. I’m there.

It’s been nine long years since Taylor’s diagnosis. I imagine many people wonder why I continue to fight, why I still believe.

Rare is not an excuse. It’s too darn easy to write off rare disease as “unfortunate.” It’s definitely unfortunate, but it happens more often than you might expect. There are approximately 7,000 rare diseases and disorders, and more are being discovered each day. Thirty million people in the United States are living with rare diseases; globally, it’s estimated that 350 million people suffer from rare diseases. About half of these people are children; 30 percent of them will not live to see their fifth birthday.
The costs are enormous, both in terms of human suffering and economic impact. According to our partner, the EveryLife Foundation for Rare Diseases, 95 percent of rare diseases don’t have a single FDA-approved drug treatment. During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined. Taylor takes multiple drugs, and we continue to add expensive medical equipment. Since January 2014, she’s visited the ER three times (once via medic) and had two separate hospital stays (one for six nights). All of this, and just to treat her symptoms—not the root cause of her disease. Just imagine the costs for Taylor alone in 2014. Then, multiply that by 30 million. Wait…go ahead and multiply the number in your head by the worldwide number of 350 million people. You can’t imagine it. It’s mind-boggling. What we have is a serious public health problem.

Did I give rare disease more than a passing thought before Taylor’s diagnosis? No, of course not, and if I did, it likely sounded something like, “Glad it’s not my family or me.” I know better now.

The problem of rare disease belongs to all of us. Each of us can do something to help. Significant progress can happen with greater awareness, advocacy and funding. And in the coming weeks leading up to Rare Disease Day 2015 at the end of February, I’m inviting other rare disease advocates to share their thoughts on how we can all get involved and make a difference.

We know the facts. The question is, will we talk, or will we ACT? Hope requires action, and there are 350 million people who need your help.

Yesterday, the Charlotte Observer printed this quote, always one of my favorites:

“I dwell in possibility.” ~Emily Dickinson

Please join Taylor’s Tale in creating new possibilities for people like Taylor. Together, we can change lives.

Wishing you joy, peace and beautiful dreams this holiday season and into the New Year.

Do you have an idea for how the average Joe or Jane can make a difference in the fight against rare disease? How can citizens help millions suffering from rare disease by applying their skills in areas like awareness, advocacy and fundraising? Leave a comment below or send us a note to join the conversation.

Rare is Everywhere

Published: March 19, 2014 ~ 2

By Laura Edwards

Watch this beautiful video, filmed at the candlelight vigil hosted by Taylor’s Tale in Charlotte’s Freedom Park on World Rare Disease Day 2014, and be transported to a special place where candles glow, heroes live and rare is beautiful.

Thanks to Beth Fulton for sharing her time and talents with us in the making of this video.

Making Fruit Punch Out of Berries

Published: March 2, 2014 ~ 0

By Laura Edwards

World Rare Disease Day is an annual awareness initiative founded by the European organization EURORDIS and coordinated by the National Organization for Rare Disorders, Taylor’s Tale and other national and patient organizations in the U.S. and worldwide. Since its founding in 2008, it’s resulted in over 1,000 events and a great deal of media coverage.

Taylor’s Tale, the non-profit organization founded in honor of my younger sister, Taylor, held an event to recognize Rare Disease Day on Friday for the second straight year. We asked members of the rare disease community and the public to gather in Charlotte’s Freedom Park for a candlelight vigil to honor the 350 million people fighting a rare disease, their caregivers and the experts working to find life-saving treatments.

Judy Mayer, my friend and fellow soldier in the fight against rare disease, worked around the clock to pull off Charlotte’s official event in recognition of Rare Disease Day while my mom, Sharon King, prepared to join about 150 other rare disease advocates in Washington for a week of sessions and meetings with members of Congress on Capitol Hill.

Two days before our candlelight vigil, Judy wrote to inform my mom and me that when she opened the box from the glow stick company, she found 150 multicolored glow sticks, even though she ordered white glow sticks, and the box was clearly marked “white.” Since we didn’t have enough time to place a new order, Judy wrote the mishap into our script. So as the sun dipped behind the trees on Friday evening, our emcee, Kathi Knier, asked the crowd on the lawn to light their glow sticks, which “shone in many colors to remind us of the more than 7,000 rare diseases and disorders that have been identified to date.” The colorful glow sticks lit our small corner of the city park, symbolizing the millions who, like Taylor, suffer from one of 7,000 rare diseases, many of which have NO approved treatment.

Bryant Graeber, one of Charlotte’s many rare disease heroes, shared a moment with me before we got started.

Soft notes from a guitar drifted across the stage, and those glow sticks bobbed on the lawn, like multicolored fireflies on a summer night from another lifetime. And as I sat in my chair across the water from the small crowd that had gathered to honor heroes like my sister and Bryant Graeber, who has MPS1 and whose optimism shines a light on the world brighter than the brightest candle, I thought that those glow sticks looked strangely beautiful in the cold February night.

While the glow sticks danced in the twilight and the music filled my ears, I thanked God for people like my mom, a true champion for the rare disease community, who at that very moment was making her way back from a week in our nation’s capital during which she did what she was born to do: change the world. I thanked God for people like Judy, who, in the 11th hour, did what rare disease advocates do best: she made lemonade out of lemons – or, as I said in my reply to her email about the goofed glow sticks order – she made fruit punch out of berries. And in the war against rare disease, that’s the key. There’s nothing you can do about what’s already in your genes, or in my case, the genes of someone you love. In most cases, once rare disease crashes into your life, you have to stay in the ring and fight it as best you can. But you don’t have to take those punches lying down. You can hit back. And if you land enough punches, and you believe you can win, someday, you will.

Rare disease affects 30 million Americans (or one in 10 people) and 350 million people worldwide. Are you personally affected by rare disease, or do you know someone who is?

The Greatest Race

Published: December 22, 2013 ~ 0

By Laura Edwards

Thanks to my friends at Run For Your Life, who hooked me up with a free pair of purple Saucony Triumphs and some other swag for putting together one of the biggest – and most awesome – teams at Charlotte’s Thunder Road Marathon. I also snagged a pair of limited edition, stereo-Bluetooth earphones from yurbuds.

running gear

I don’t think anyone’s ever made a shoe quite like the Brooks Glycerin (the only shoe I’ve worn in a race for three-plus years), but I’m willing to branch out in the name of purple and variety. And the earphones are just cool.

I’m already filling my race calendar for the coming year, and though I’ll never be able to match the epic journey of my blindfolded run for my sister at last month’s Thunder Road Half Marathon, I couldn’t be more excited about running for Taylor and the fight against rare diseases in 2014.

Less than a week after I kick off my sixth year of running for Taylor with the Charlotte 10 Miler, Taylor’s Tale and other organizations from more than 70 countries will recognize Rare Disease Day. On Feb. 28, 2014, the seventh annual Rare Disease Day will provide a platform for patients, patient representatives and others to raise awareness about rare diseases and the huge impact they have on patients’ lives. Since its founding in 2008, Rare Disease Day has contributed to the development of national plans and policies in many countries, including the United States. Last year, Taylor’s Tale sent two board members, including my mom, Sharon King, to Washington to attend sessions, visit with legislators and advocate on behalf of the 30 million Americans who suffer from a rare disease.

As my mom and her travel buddy, Debbie Carney, forged relationships with key decision makers and gained valuable knowledge, the rest of the Taylor’s Tale team joined with Dr. Steve Gray of the UNC Gene Therapy Center to announce co-funding for a two-year research project that, if successful, could lead to a clinical trial for children with two forms of Batten disease. Ten months later, Dr. Gray’s work is on track, and our team is focused on securing additional funding to help move the project past the first two years and toward our goal of a treatment.

My husband and I are hosting Christmas this week. This weekend, we did some December “spring cleaning” to get our house in shape for the holidays. I pulled all of my race medals down from the plastic hook on the office closet door, where I’d thrown them up in a haphazard fashion. I counted seven from 2013:

As I spread them out on the carpet, I relived each race, from a rain-soaked Charlotte 10 Miler in February to a rain-soaked Huntersville Half Marathon last weekend. I realized I set a new personal record (PR) in every race except the one I ran blindfolded. And I felt Taylor’s absence at every single one. As I sat alone on the floor and ran my fingertips over those medals, feeling the raised details of each one as a blind person would, I thought about how much my sister has declined this year.

I got faster in 2013 – a lot faster. I owe it to a good friend who ran my first race with me and helped me – a born sprinter broken by soccer – believe I could be a distance runner; to the shoes that were made for my balky ankles and feet; and to the doctor who convinced me that lower mileage and cross training might actually make me better on race day. But more than anything, I owe it to my sister, who gives me wings when my lungs burn and my body wants to quit. More than anyone else, my sister, who can no longer walk without assistance, taught me how to fly.

I have big plans for 2014, both on and off the race course. I intend to keep setting PRs. But at the end of the day, my medals are just worthless chunks of metal.

Dr. Gray and others are racing to save kids like Taylor and the millions of people fighting a rare disease.

Theirs is the greatest race of all.

World Rare Disease Day 2013

Published: February 28, 2013 ~ 0

By Laura Edwards

This morning, about 80 people joined Taylor’s Tale as we recognized World Rare Disease Day and made an exciting announcement about the fight against Batten disease.

I shared our family’s journey and introduced our featured guest. Following is a modified version of my comments.

My “little” sister is 14. We’re the same height.

But I still remember the day she came home from the hospital. I raced my then-best friend and now-husband up the stairs to peer over her crib (he got there first).

I remember how my sister learned to read as a toddler.

I remember 5-year-old Taylor. She seemed perfect. Beautiful. Intelligent. Healthy. Spunky. She kept our brother on his toes. The world – and Stephen – were hers to conquer.

But 6-year-old Taylor couldn’t handle first grade math. Addition and subtraction left her in tears.

Seven-year-old Taylor couldn’t find her way in dim places.

Just three weeks before my sister’s eighth birthday, a monster called Batten disease burst into our world and shattered it into a thousand little pieces.

Batten disease is a rare, inherited disorder that affects mainly children. To get it, kids have to inherit a “bad copy” of the gene from each of their parents. I got one good copy and one bad copy, so I’m a carrier; that means that I’m healthy but could pass the gene on to my children. My brother is a carrier, too.

Taylor got two bad copies.

With one roll of the genetic dice, our little sister got a fatal disease.

Fourteen-year-old Taylor lives in a world that’s always dark. She can’t learn like other kids. She has seizures. She loves to sing, but soon, Batten disease will steal her speech. Even now, she only has a few words. I can ask my sister if she had a good day at school, but we can’t talk about it.

Taylor ran two 5K races with the help of a sighted running buddy through the Girls on the Run program at her school. But that was four long years ago. Soon, my sister will be in a wheelchair.

Batten disease steals the lives of children.

It upsets the natural order of things.

Children aren’t supposed to have their dreams snatched away from them by a monster like Batten disease.

They aren’t supposed to die.

Taylor was diagnosed with infantile Batten disease on July 24, 2006.

I still remember the long moment we all shared in the floor of my parents’ dark bedroom; wrapped in each others’ arms; soaked in each others’ tears.

The doctor who delivered that news told my parents to take her home and make happy memories.

We don’t have anything against happy memories. But while Batten disease is in our DNA, going down without a fight is NOT.

Every day with Batten disease is a hard day. Still, in the near-seven years since the day our lives changed forever, we followed the doctor’s orders. We made our fair share of happy memories.

But we made time for fighting, too.

With the help of good friends, we founded a non-profit organization. We raised nearly half a million dollars for potentially life-saving research and promoted awareness of Batten disease. We advocated for increased support for the rare disease community.

We partnered with other groups that share our mission; American organizations such as the Batten Disease Support & Research Association and EveryLife Foundation for Rare Diseases, and international organizations such as the Global Genes Project.

And along the way, we met MANY families like ours.

One in 10 Americans suffers from a rare disease.

Chances are, you know someone fighting his or her own battle.

To borrow words from my mom, diseases like Batten are rare…but hope should not be.

That’s why I’m pleased to share reason for new hope with you today.

On behalf of Taylor’s Tale, I’m excited to announce that we’ve joined an international coalition of organizations founded by families like ours – families that refused to go down without a fight.

Together, we’ll fund gene therapy for two forms of Batten disease. This revolutionary work will take place right here in our home state at the University of North Carolina at Chapel Hill. The goal of this study is to pave the way for a human clinical trial.

I’ve watched this disease try to rob Taylor of EVERYTHING. I’ve prepared myself for the reality that I will likely outlive my little sister.

Bottom line – I HATE Batten disease. But in seven difficult, painful years, I’ve witnessed great progress. I’ve NEVER stopped believing.

And I believe in the ability of THIS project at UNC to help save the lives of children like Taylor.

Its leader is an expert in AAV vector design and gene therapy. He graduated from Auburn University and earned a PhD from Vanderbilt University. He completed a postdoctoral fellowship at UNC, specializing in central nervous system gene therapy. His work focuses on the development of treatments for neurological diseases. He’s been published in multiple journals and mentioned in high-profile publications and blogs. His work is chronicled on the pages of a 2012 book that explores gene therapy as the next frontier through the stories of real patients and families. The doors of his lab are decorated with photos of the children for whom he and his colleagues go to work every day.

The leader of the Global Gene Transfer for Batten Disease project is Steven Gray, PhD.

To learn more about this exciting initiative, click here.

ACTION ALERT: Help Children with Rare Diseases Gain Access to Lifesaving Treatments!

Published: January 28, 2012 ~ 6

By Laura Edwards

I need your help with something.

If not for me, do it for Taylor.

If not for Taylor, do it for the thousands of other children who suffer from rare diseases and don’t have access to new drugs that could save their lives – not because scientists are incapable of developing those drugs, but because the current wording of a federal law makes it difficult for them to navigate the regulatory process and bring their discoveries to clinic, where they can actually help real, live people.

The Unlocking Lifesaving Treatments for Rare diseases Act of 2012, or ULTRA, H.R. 3737, would:

improve access to the FDA’s accelerated approval process for extremely rare diseases
provide a more predictable regulatory process
decrease associated costs and spur investment in the development of treatments
require the FDA to use the best science available, ensuring that treatments are safe and effective and reach patients sooner.

Watch this short video message from Tracy VanHoutan, founder of Noah’s Hope – an important partner of Taylor’s Tale in the fight against Batten disease and other rare diseases – to learn more about why you should support the ULTRA Act of 2012.

In less than five minutes, YOU can help thousands of children like Taylor. Please follow the link below to contact your legislators, asking them to support a NO-COST bill that would accelerate the rate at which we are able to get lifesaving treatments to children with ultra-rare diseases. Ask your friends and family to do the same, because we need 5,000 people to sign on in support of the ULTRA Act of 2012 prior to Rare Disease Day (Feb. 29, 2012)!

Support the ULTRA Act of 2012

Note: When you click on the link, you will be redirected to the website of our partner, the Rare Disease Legislative Advocates (RDLA).

Enter your contact information.
Click the button to review and submit a message to your legislator.

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Visit the RDLA Site Now to Show Your Support