The Advocate

Published: May 15, 2013 ~ 0

By Laura Edwards

The American Society of Gene & Cell Therapy’s annual conference kicked off early this morning in Salt Lake City, Utah. Taylor’s Tale is co-funding gene therapy for infantile Batten disease at the University of North Carolina, so the conference made our short list of “meetings to attend.”

The timing posed just one logistical problem: my father’s brother passed away last Tuesday, and the memorial service was scheduled for this afternoon.

After much soul-searching, Mom let Dad and Taylor put her on a plane bound for Salt Lake City yesterday evening. The minister gave a beautiful service, Dad and his surviving brother shared beautiful words, and Mom’s angel friends and the ladies of the church took great care of everyone. And two time zones from home, Mom did what she does best: save the world, or at least make a good bit of progress.

Fighting Batten disease and being an advocate for a rare disease community of 350 million people is a hard job, especially on top of caring for someone with a life-threatening illness. It’s a full-time job. And Mom, as dedicated as she is to Taylor’s Tale and all that we stand for, will always tell anyone who asks that she’s Taylor’s mother first. Taylor and her classmates have a dance at school on Friday. Before she left town, Mom took Taylor shopping for a dress; yesterday, she left the dress along with the perfect necklace and pair of earrings where Dad could find them. I’m certain that she’ll be sad Friday when she opens her eyes in a hotel room in Utah and pictures Taylor getting ready for that dance and knows that she can’t be there to give her a hug. I know she wanted to be there for my dad this afternoon when he read the words he wrote for his little brother.

But sometimes, saving the world means making tough choices. And this week, Mom’s making the kind of progress we dreamed about when we founded Taylor’s Tale in a Charlotte living room. She’s making the kind of difference I told her we could make – she could make – one night in the summer of 2008 when I stopped our walk in her neighborhood to make a short but passionate speech about how our effort needed to become a public charity.

We’re on the verge of something great, but we haven’t won. Which means my mother’s not done fighting yet. And I wouldn’t trade her for anyone else in the world.

What Drives Me

Published: May 2, 2013 ~ 0

By Laura Edwards

Tonight marked the fifth annual meeting of the board of directors of Taylor’s Tale. I slid behind the wheel of my car at 9 p.m. – almost three hours after I pulled into my parking spot and long after a faded sun dipped behind swollen, purple clouds outside the windows in the board room.

Four-plus years have passed since we became a public charity; six-plus years have passed since we declared war on Batten disease. The discussion at tonight’s meeting reflected the incredible progress that has been made since my mom placed a bulk order for copies of The Cure, Geeta Anand’s stunning account of how John Crowley raised $100 million in an effort to save his children from Pompe disease, and distributed them to a small battalion of hand-picked soldiers in a Charlotte living room in the fall of 2006.

Tonight, my mom sat at the head of a board room table to deliver her updates. Some of the faces around the table were the same; some of them were different.

One month ago, Mom attended the first Southeast Venture Philanthropy Summit in Chapel Hill. Other attendees included the Michael J. Fox Foundation, the Gates Foundation and sleek biotech companies of all shapes and sizes.

Three days ago, Mom and two other board members toured the University of North Carolina’s Gene Therapy Center Vector Core – the most advanced facility of its kind in the nation. Down the street, one of the nation’s top gene therapy experts, Dr. Steven Gray, is leading a two-year gene therapy study for two forms of Batten disease that is partially funded by Taylor’s Tale. If successful, the work could lead to a human clinical trial in just a few short years. And as much as we want this for Batten disease, it’s much bigger than that. If Dr. Gray gets this to work, it can treat a lot of people with all types of problems; the principles can be applied to many other diseases – from Parkinson’s disease to ALS (Lou Gehrig’s disease) to Alzheimer’s disease…I could go on. And not only that, but it will be a one-time, low-cost, minimally invasive treatment as opposed to life-long, expensive, potentially invasive treatments that – in many cases – address some of the symptoms but don’t treat the disease.

Seven years ago, I was learning the ropes of healthcare marketing and PR, coaching a girls’ soccer team, covering sports for the local paper and planning a wedding. I had a half-finished young adult novel and figured I’d get to it as soon as the honeymoon ended.

That all changed when I got the phone call.

Google “neuronal ceroid lipofuscinosis” and skim the search results. That’s how I first learned about our new world – and Taylor’s – on July 24, 2006, sitting at my desk at work, with my sobbing mother on the other end of the phone line.

The geneticist who diagnosed my sister said we shouldn’t bother with hope. My response from day one was “Screw that,” but fighting is easier said than done. It’s never been easy.

We’ve lost so much since that day.

But I’m proud of what we’ve achieved. Mom’s reports at tonight’s Taylor’s Tale board meeting embodied all that our team has accomplished and the astounding impact we stand to have.

Our fight began because of our love for one little girl. In those early days, we saw the love and the laughter and the courage that we so cherished about Taylor embodied in all of the children fighting Batten disease, and we fought for them too.

As we forged on, we learned more about the impact of rare disease: 30 million people in the United States – and 350 million worldwide. We realized that we could be doing more with the incredible scientific innovation we already have. We partnered with or endorsed organizations like the Global Genes Project and the EveryLife Foundation and went to Washington to lobby for all those fighting a rare disease.

And as we learned more and more about the wonders of gene therapy and the incredible people behind it, we realized that we could be part of something bigger than we ever imagined.

The possibilities of the immediate future and these next few years are boundless, and my mind races as I think about the impact we – the little group called Taylor’s Tale that my mom and I and a group of women who don’t like to take “no” for an answer founded in a mishmash circle of couches and ottomans and chairs over pimento cheese and egg salad sandwiches – could have – directly or indirectly – on millions of people.

That’s what drives my mind.

But in my heart, I’ll always be driven by my love for “T.”

Magic Carpet to the Stars

Published: April 29, 2013 ~ 4

By Laura Edwards

My sister, Taylor, was diagnosed with infantile Batten disease on a blistering summer day in 2006, just 26 days before her eighth birthday. I wasn’t in the room with Mom and Dad when they received the news, but I’ll never forget the geneticist’s words to them:

“Take her home and love her. Make happy memories together. That’s all you can do.”

In the worst hour of our lives, we learned that my bright-eyed, golden-haired, intelligent sister – a second grader who loved to sing and dance and run and play – would go blind, have seizures and lose the ability to walk, talk and swallow food. She would deteriorate such that she would be confined to a wheelchair. She would have to have a feeding tube. Eventually, she would die – blind, bedridden and unable to communicate.

For a long time, we refused to condemn Taylor to the horrible fate encoded in her genes. We vowed to fight like hell for my sister – and in the process, for others like her. We never questioned the need to make happy memories with my little sister – we watched the lights of those once-bright eyes fade a little more with each passing month – but we knew that wasn’t ALL we could do.

On Dec. 7, 2006, Taylor, my husband and my grandparents climbed into my Ford Explorer in our driveway in Charlotte. I loaded a Harry Potter audio book into the CD player and pointed the SUV south for Orlando, FL, where my parents were wrapping up a crash course on lysosomal storage disorders at their first research conference and my sister’s dream of seeing Cinderella’s castle and meeting all of the Disney princesses awaited.

At the end of our 600-mile journey, we pulled into Disney’s Port Orleans Resort and collapsed into our beds.

The very next morning, we had breakfast with the princesses inside Epcot Theme Park. Taylor collected all of the royals’ autographs inside a pink and purple autograph book and smiled starry smiles whenever the princesses hugged her and crouched down to whisper secrets in her ear. She got a huge, plush “Dale” hat in honor of her big sister (I’ve had a thing for Chip and Dale since preschool) and giggled at her Papa Jerry’s silly skull hat. She marveled at the giant Christmas tree and climbed to the very top of Peter Pan’s tree house. In the Magic Kingdom, she clapped to the “thump” of the music at the daytime parades and squealed on the peaks and valleys of Space Mountain and Thunder Mountain. She sat on Santa’s lap and asked for reasonable gifts, like new Disney DVDs and pink hula hoops. She called out the colors of the Christmas lights that decorated the floats of the nighttime parade and lifted her face up to the fireworks that painted the sky over Cinderella’s castle.

We spent just two full days in the parks, but we packed a lifetime of memories into those two days. We walked those enchanted sidewalks as anonymously as the thousands of other faces there to enjoy their wonders. We made that time ours – and Taylor’s.

Today is “World Wish Day;” it marks the day that the first child received his wish to be a police officer for a day, inspiring the founding of the Make-A-Wish^® Foundation. The Make-A-Wish website states that it has fulfilled the wishes of more than 300,000 children with a life-threatening medical condition.

My sister isn’t among them.

I think that Make-A-Wish is an incredible organization and know that they have brought happiness to many children and families. It just wasn’t for us. Perhaps if we’d called the team at Make-A-Wish when we decided to take Taylor to Disney World in 2006, we could have stayed for longer than two days. Maybe we could have dined with Cinderella in her castle instead of the cute Norwegian banquet hall in Epcot. Maybe we could have stayed at the Polynesian instead of the Port Orleans. But while we all knew, deep inside, that we threw the trip together when we did to give Taylor a chance to see Disney while she still could, for those two days, Batten disease was out of our minds – at least as much as was humanly possible. For two days, we were just a family that loved each other, a family on the trip of our lives.

On our second and last night, we stayed in the park long after the last Christmas parade float disappeared around the bend and the last firework sparkled and died over the gleaming turrets of Cinderella’s castle. Just before the park gates closed, we took Taylor back to her favorite ride, Aladdin’s Magic Carpet.

As the attendant invited my sister and me into the circular ride to select our magic carpet, Aladdin and Jasmine appeared at the gate.

My sister stopped in her tracks. She stared at the two characters, spellbound. She’d seen them, or other actors in the costumes, numerous times in the parks over the past two days – but this was different. Aladdin and Jasmine were there to ride their magic carpet ride, and we were the only other visitors in sight.

I watched as the two bent down to hug Taylor and invited her to ride with them. My sister could only nod and take Aladdin’s hand as he led her to one of the magic carpet cars. And for the next 10 minutes, the attendant let my sister and me ride that magic carpet with the prince and princess, over and over again, as “A Whole New World” played in the background. When our dream ride came to an end, the valiant prince gave my sister a kiss on the cheek.

If we were to go to Disney World today, my beautiful, sweet sister would not be able to see any of its wonders or walk its paths without a lot of assistance. She’d get tired. We’d have to make frequent medication stops. She might smile for the camera, but she wouldn’t know where to look. She couldn’t sing along to her favorite songs or ask her favorite princesses for autographs.

We still haven’t called Make-A-Wish. But on one enchanted evening, my sister and I rode a magic carpet to the stars. Nothing – including Batten disease – can take that away from us.

The Center of the Earth

Published: April 25, 2013 ~ 2

By Laura Edwards

Scaling a mountain is a popular metaphor for overcoming a great challenge. Well-meaning friends have compared our family’s fight against Batten disease to scaling a mountain.

But on a clear day, you can see the top of a mountain. And thousands of people have reached the summit of Mount Everest, the world’s highest peak at over 29,000 feet. If I had the desire to climb Everest (I don’t), someone could tell me how to do it. Even Edmund Hillary, who made the first known successful ascent, had Tenzing Norgay, a Nepali sherpa climber, to guide him to the roof of the world.

Fighting Batten disease isn’t like climbing a mountain. It’s like traveling to the center of the earth.

No one can tell us which way to go. No one has been there. Though my sister is far from the only person with Batten disease, she, like all others with a terminal illness, travels a path that is hers alone. We, like all those who love someone shackled by a monster like Batten disease, travel a path cloaked in shadows; a path for which there is no map; a path that had a hopeful beginning but no defined end.

The center of the earth is not a nice place to visit. Conditions are so excruciating that they can’t be replicated in a lab. The mantle is like a huge mountain range turned upside down, heated up and shaken, which causes constant avalanches. The outer core is molten iron. Deeper, the pressure is so intense that iron solidifies, even though the inner core is believed to be hotter than the surface of the sun.

As we hurdle downward on our journey – through cascading, rocky peaks, churning lava and broiling metal – we have to make lightning-quick adjustments. We have to change equipment. Sometimes, we don’t have the right equipment for the situation – but we have to forge on anyway. Some days, we suffer first-degree burns. Rarely do we suffer a wound that won’t heal. But in the center of the earth, permanent scars are facts of life.

The center of the earth is a dark place, and you never know what you’ll find around the bend. I fight this fight like it means life or death – because it does – and sometimes, I wonder, “When we get to the end, is it gonna be worth it? What’s at the end? Is the ending of OUR story the ending of THE story, for us?

Most journeys, like most decisions to scale a mountain, are chosen. We didn’t sign up for this trip. But we’re on it, and there’s no turning back.

Buried at the center of the earth is a giant crystal. If brought to the surface, it would stretch across more than half the continental United States.

Even the most hellish journeys have hidden wonders.

The Ghost of Laurel Hill

Published: April 21, 2013 ~ 0

By Laura Edwards

Yesterday morning, I woke with the sun to run the Tar Heel 10 Miler in my little sister’s honor for the fourth consecutive year.

I’ve already collected four race medals for Taylor in 2013, but this one is special. The Tar Heel 10 Miler was just the second competitive race I ever entered; I paid the entry fee for the April 2010 edition not long after watching my sister – blind and suffering from a rare, fatal brain disease – jog across the finish line of Charlotte’s Jingle Jog and Girls on the Run 5Ks on one end of a running buddy’s guiding rope and the wings of her own courage.

The Girls on the Run 5K, staged on a sun-drenched, happy day in May 2009, was Taylor’s second race. It was also her last.

Batten disease has stolen so much from Taylor since it crept into her life that the word “unfair” doesn’t begin to do the job. The ability to run is a precious gift that too many of us take for granted, but my sister has lost many more valuable things.

I wish I could make Batten disease go away. I wish I could work magic – go back in time and give Taylor two good copies of the gene that causes Batten disease or even one good copy (which would make her a healthy carrier, like me). But I can’t.

So I share her story in my own words – both spoken and written. I help support the people who have the knowledge to find answers for children like her – people like Steven Gray, PhD of UNC’s Gene Therapy Center, to which Taylor’s Tale awarded a two-year grant earlier this year.

And I run.

On Saturday morning, I followed the brick sidewalks to the football stadium nestled in the trees on the same campus where Dr. Gray works his magic for children like my sister and where I earned my undergraduate degree. I lined up on the track at field level with 3,253 other runners. When the gun sounded at 7:30, I found an opening in the crowd and sprinted through the stadium tunnel and into my 10-mile mind game.

The Tar Heel 10 Miler, set mostly on the gorgeous UNC campus, has some tough sections, but none come close to Laurel Hill, the 200-foot vertical gain over the course of about one mile at the 8.5-mile mark. It’s so difficult that the race organizers place separate timing mats at the bottom and top and hand out special awards just for the hill, and many self-respecting athletes speed-walk it. I’ve never walked, but I’ve come close.

I went into Saturday’s race riding a streak of four straight personal records (PRs) for the half marathon, 10 miler, 5K and 10K that started at the Thunder Road Half Marathon in Charlotte last November. Even though I’d beaten my previous 10 miler record by two minutes just two months earlier at a race in Charlotte, I was determined to beat it again.

But when I reached the first Laurel Hill timing mat, things didn’t look good. My quadriceps burned, and worse – I felt winded. I never get winded. I was riding a 7:45/mile pace through the first 8.5 miles, and it’d taken a lot out of me.

As I started the climb, a voice in my head told me it wasn’t my day. I shouldn’t have eaten the sweet potato fries at Top of the Hill the previous night. I shouldn’t have stayed up till midnight watching the Boston Marathon bombing coverage. As I wheezed my way up those 200 vertical feet, I told myself that WHEN I cross the finish line isn’t important to Taylor (which is true). As my Garmin watch beeped its “Behind Pace” beep, again and again…I began to write my post-Tar Heel 10 Miler blog post in my head. I called it, “I Lost My PR and Found My Truth on Laurel Hill.” I talked to myself over my wheezing. “You can do this,” I breathed. “Forget the stupid PR. Just RUN.”

But then, something happened. My quads loosened. The tightness in my chest melted away. The houses perched at the top of Laurel Hill came into view.

For most of the race, I used my Garmin as my guide. I ran for Taylor, but I ran more for myself.

The moment I understood that is when I left the Ghost of Laurel Hill behind.

It seemed like just moments later that the stadium reappeared. I sprinted into the tunnel, down the track and across the finish line.

When I did, the clock read 1:20:48.

I beat my PR for 10 miles by almost two full minutes and ran the Tar Heel 10 Miler four minutes faster than ever before. I finished in the top 16 percent of 3,253 runners. And when I crossed that finish line, I felt as if I could fly.

Almost like I had wings.

Perspective

Published: April 15, 2013 ~ 0

By Laura Edwards

Before Batten disease robbed my little sister of her ability to run, she joined the Girls on the Run team at her school. With the help of a sighted running buddy, she jogged across the finish line of two local 5Ks.

Taylor ran her last race almost four years ago. Around that same time, I ran my first race in her honor.

My sister can’t run anymore, but I’ve logged thousands of miles for her.

In the past five months, I’ve run four races for Taylor – all different distances – and set four new personal records (PRs). Even after making the first page of results and placing second in my division at Charlotte RaceFest on Saturday, I already had my next race on my mind.

I get stuck on my times, because I’m a perfectionist. I like to challenge myself, both mentally and physically. Whereas some runners hate hills, I say, bring them on. They help me keep things in perspective; my sister’s battle against Batten disease is tougher than any hill I’ll ever face, even if I had two broken legs.

But the senseless acts of hatred that took place at the Boston Marathon this afternoon reminded me that it’s not all about when you cross the finish line.

It’s also about the people you love who staked out a spot along the course to wave handmade signs – the people who will give you a hug at the end, no matter how sweaty you are.

It’s about being healthy enough to finish a race – first or last.

It’s about having this day to stage a race, any race – because each day we receive is a gift from God.

My heart goes out to all those affected by the tragedy in Boston today.

And for as long as my legs will carry me, I’ll keep on running for Taylor.

The Burden of Believing

Published: April 5, 2013 ~ 0

By Laura Edwards

I don’t believe in doing things halfway – least of all when it comes to fighting Batten disease. I get that from my mom.

I used to run 30 miles a week. I ran a minimum of six days out of every week. When races rolled around, my body ached. I averaged a 9:00 mile or slower for long races, but I really had to dig deep for that. I knew I could run faster, but my body wouldn’t respond.

Last fall, I decided to cut back on my mileage. I went to 20 miles a week. A couple of days each week, I traded my runs for walks or weights. I dropped the 10-mile runs. I decided to trust my body. I hoped that if I could keep up a training run for seven or eight miles, I could bring it on race day for 10 or 13.1.

Some people might have said I was “slacking off,” but you know what? My body stopped aching – and I got FASTER. I set a new personal record for 13.1 miles at the Thunder Road Marathon in November. In February, I set a personal record for 10 miles at the Charlotte 10 Miler. In March, I set another record for 3.1 miles at the Run the Creek 5K. My training runs got faster, too. I used to average 10:00 miles for those. Earlier this week, I ran a mile in 5:45. And I didn’t even do that on fresh legs – I’d already run five miles.

The point is that the fight against Batten disease deserves our best, but sometimes, “giving our best” means taking care of ourselves and reserving our energy so that we’ll be fresh when we have to climb the toughest hills. For a long time, I’ve said that this is a journey – not a sprint. I know that there’s only so much we can do with the cards we were dealt. I know that our situation sucks and that nothing that happens in any other facet of my life – regardless of how wonderful it may be – will REPLACE what we have lost and will lose. But I’m not any good to anyone when I’m in my darkest place. I’m not useful when I’m fighting writer’s block at 2 a.m. or yelling at my laptop because the Taylor’s Tale website has a glitch due to some technical issue out of my control. I’m not good to anyone when I’m losing my mind over someone else’s bonehead moves or heartless actions or words. When I find myself in my darkest place, it’s time to hit pause. Sometimes I remember to press the button; other times, I forget. I forgot more often than not over the past six-plus years, and I can’t get that time back. But my memory is improving, and my life – and my net impact on this fight – will get better as a result.

Laura, Mom and Taylor

I LOVE my sister more than anything, and I HATE Batten disease more than anything. I want to eradicate Batten disease, but if Taylor could tell us what she wants and feels, I think she would tell us that she doesn’t want us to eradicate our friendships, marriages, careers and lifelong dreams in the process. She would tell us that we can fight Batten disease and have those things, too. She would tell us that she wants us to be happy. Not “happy” like we were before Batten disease entered our lives or as if we’ve moved on – but “happy” as in we’re going to recognize the things we still have that are good and keep it from robbing us of everything we’ve ever known.

I believe that we CAN win this battle. I just don’t want us to lose everything else that makes us who we are along the way. Razing all the cities in your own kingdom is no way to win a war. If you kill all the bad guys but have to go home to smoldering ruins, what’s the point?

I can’t let Batten disease steal my sister AND everyone who loves her.

Full of Wonder

Published: March 31, 2013 ~ 0

By Laura Edwards

We spent many of the Easters of my childhood on Oak Island, a marshy finger of land sitting in the Atlantic Ocean just off the southern tip of North Carolina. My grandparents built a cedar shake house about a mile from the beach, on a scrubby patch of land on 48th Street – a long, residential road that ends at the Intracoastal Waterway. They never poured a driveway, so when my brother and I hopped out of the car after excursions to the beach or the town park, we often found ourselves ankle-deep in thick, dark gray sand teeming with fire ants.

In those days, Oak Island wasn’t a tourist destination and had a small, mostly older year-round population; it didn’t boast many restaurants, much less churches. So to celebrate the holiday, my Presbyterian family and I donned our Sunday best and drove to the Baptist church at the corner of our street and the island’s main road. After the service, we changed clothes at the beach house and went to the park, where Mom and Dad and our grandparents hid eggs we’d helped them hard-boil and dye in every color of the pastel rainbow in the airy kitchen with the vaulted ceiling the night before.

These are the memories that define Easter for me. I realize only now, as I share them here, that my sister Taylor isn’t in any of them. The last picture of the beach house that I remember is of my mom – eight months pregnant with Taylor – in the sun room where I sat at the white desk to draw pictures and curled up on the love seat to lose myself in a story after a sun-drenched day on the beach. My grandparents had to sell the house that year. It was an “adult” thing that I didn’t notice at the time or understand after it was over, even after I’d had time to dry my tears.

It’s been nearly 15 years since the beach house changed hands, but I still miss it. Even more than the house, I miss the way of life that’s disappeared in recent years. The house itself had its imperfections; at 1,500 square feet, it didn’t have enough bedrooms to hold our extended family, and it never stayed cool during the brutal summer months. The blue vinyl couches in the living room made you sweat even if icicles hung from the porch railings outside. We didn’t have a first row or even a third row view of the ocean; 48th Street runs perpendicular to the ocean road, and our neighbors across the street had an odd affection for plastic yard ornaments. And those fire ants…

But I’ll never forget our late-night egg-dying sessions or our private Easter egg hunts in the park; Fourth of July fireworks on the Cape Fear River in Southport, just across the bridge on the mainland; picnics in the wind-beaten cabana on the Oak Island beach; family baseball games at the town’s baseball diamond and the satisfaction of knowing that I had the coolest grandmother in the world as I watched her run the bases after hitting the ball into left field; walking to the end of 48th Street in the hours before dusk to find my favorite rock perched on the shore of the Intracoastal, scribble stories in a worn spiral notebook and shape my dreams.

The meaning of Christmas, the holiday that celebrates the birth of Christ, is easy for most people to understand. But a lot of people lose perspective when it comes to Easter.

Easter, the holiday that coincides with the arrival of spring, celebrates the resurrection of Christ. But in simpler, more universal terms, it celebrates new life.

We’ve lost so much since the days of the beach house. My grandmother, the matriarch of our family, passed away on Christmas Day 2012, but we lost much of her to a monstrous brain disease called Lewy body dementia long before that. Taylor, absent from all of those happy Oak Island memories, began with a life that seemed full of promise. She has lost more than all of us.

But in the wake of heartbreak, new hope still emerges. That is the miracle of life. And I understand now that THAT is the miracle of Easter – that it’s possible to BELIEVE even after a tragedy. God’s greatest miracle was the resurrection of Christ and the gift we received – eternal life.

Batten disease is senseless. It’s terrible. It’s tragic. It’s winning the battle for my sister’s life here on Earth. It’s stolen so much – priceless pieces of Taylor that we’ll never get back; pieces of ourselves, stripped away by the pain of being faced with losing someone you love to a monster like Batten disease; and most of our energy as we battle it day in and day out to give hope to future Taylors.

But we live in a world full of wonder.

Tomorrow is a new day.

I believe.

I Give it an ‘A’

Published: March 28, 2013 ~ 0

By Laura Edwards

Each February, students of all ages dedicate their precious weekends to play music in my little sister’s honor and raise money and awareness for Taylor’s Tale and our fight against Batten disease.

Polly Greene, my late grandmother’s best friend and a beloved family friend and piano teacher, founded the piano playathon in her personal studio in 2008.

Co-chair Pamela Tsai and other teachers joined Polly’s effort, and the event outgrew her home by year two. Last month, the fifth annual playathon for Batten disease featured 120 students of 17 teachers. They played at three venues in Raleigh, NC and raised about $2,500 for Taylor’s Tale. The event has been covered by multiple TV news stations, including this feature story by UNC-TV.

This is Polly with Emma Ogden – one of her students. Emma loves playing in the playathons. She chose Taylor’s Tale as the topic for a school project; she put 100 percent effort into researching Batten disease and our story on her computer and created this beautiful poster.

We’ve had events and campaigns that have raised more money than the piano playathons.

But these students and their teachers have helped us share our story with a lot of people; I can’t put a price tag on that.

And nothing touches my heart – or fuels my fire to keep fighting the monster – more than angels like Emma. There’s just nothing like kids helping kids.