The Price of Life

By Laura Edwards

On July 24, 2006, we learned that my little sister, Taylor, has infantile Batten disease.

Since that tearful day, the hardest thing to face has been the disease itself – its methodical way of robbing my sister of everything that once shaped a life that seemed incredibly promising and bright, and the knowledge that all children born with Batten disease die from Batten disease.

Over the past six years, the second hardest thing to face has been the gauntlet that is the world of rare disease research – and struggling to maintain the resolve required to fight for the lives of children like Taylor (a fight that grows more difficult with each day as Taylor’s own light begins to fade).

Since 2007, Taylor’s Tale, the 501(c)3 non-profit organization my family and close friends founded to help give children like Taylor and families like our own a chance to believe, has raised close to $350,000 for the fight against infantile Batten disease. Those funds – the vast majority of which were donated by individuals during an economic downturn – contributed to the development of an enzyme called PPT1 in a lab in Texas (children who lack or are severely deficient in PPT1 have infantile Batten disease); helped support a mouse colony in London; backed important research at other institutions and, in general, helped spark new interest in infantile Batten disease research among the scientific community. We’ve witnessed incredible progress.

But we still don’t have a treatment. Taylor swallows 24 pills a day and goes to multiple therapy appointments. The pills and the therapies address her symptoms – to some extent – but they don’t touch the disease, which continues to take bits and pieces of her away from us.

About a year ago, we talked with an exciting, young gene therapy expert who has taken a disease similar to Batten disease to the brink of clinical trial. He laid out a plan for our disease; he told us how much it would cost and how long it would take him to do the work.

He could do the initial work for $150,000. From start to finish, the project would cost $3-5 million over approximately three years. He told us he’d be ready to deliver treatment to real kids (not mice, dogs or monkeys) by the first quarter of 2016 – just over three years from now.

I get excited about this expert’s work, but then I hear well-meaning would-be donors’ unspoken words in my head.

“Several million dollars just to get to clinical trial? That’s a lot of money. And for so few children. It’s a really good cause, but if it wasn’t so rare…”

The June issue of Reader’s Digest published a list* of studies and programs funded by federal tax dollars – and the requisite price tags. Here are my favorites:

  • International Center for the History of Electronic Games for video game preservation – $113,227
  • Columbia University online dating study – $606,000
  • Wellesley College study that asked the question, “Do you trust your Twitter feed?” – $492,005
  • Virginia Commonwealth University study on hookah smoking by Jordanian students – $55,382
  • University of California Riverside study on whether happy or unhappy people spend more time on social media sites – $198,195
  • Primate researchers studying (in part) what feces-throwing among chimps reveals about communication skills – $592,527
  • National Science Foundation study on Women, Weaving, and Wool in Iceland, in the years AD 874 to 1800 – $338,998

In all, these seven studies cost $2,396,334 – about half the proposed cost to develop a life-saving treatment for children with a fatal disease that has no cure.

This Thursday marks the beginning of the 25th annual Batten Disease Support & Research Association (BDSRA) conference – a gathering of affected families and the world’s leading experts. There are many things about the conference that are difficult for me – it is hard to be around so many affected children, and the event has never been for me what it is for many families – an opportunity to spend time with others who understand our battle. For my mom and me, the conference has always singularly been about connecting with researchers and others who could help us get closer to achieving our dream of finding answers for children like Taylor. I’ve never been to any of the programs for siblings; I use “free” time to pick the brains of PhDs and MD PhDs in empty conference rooms or the bar. And every summer, I’ve marveled at the progress that the experts dedicated to Batten disease have been able to make with the support of relatively few resources.

But this will be our sixth conference, and we still don’t have a treatment for children like Taylor. I remind myself to be logical – that science moves at its own pace; that six years is not a long time in the world of rare disease research.

And then I hear that we could save some of the children I’ll see this weekend – maybe not my own sister (nearly 14), but others, plus many others in the future, for a couple of million dollars. And I wonder why, if we can spend $338,998 studying the weaving habits of Icelandic women who lived more than 1,100 years ago, we wouldn’t jump at the chance to spend less than half that to kick-start a study that could save the lives of children living NOW – and children yet to be born? And if we can spend nearly $2.4 million in federal funds on seven studies that don’t save lives, wouldn’t we be willing to spend just a little bit more to save the life of even one child – let alone hundreds or thousands?

*Wastebook 2011, produced by Sen. Tom Coburn

Loopy for a Cause

By Laura Edwards

If you read my blog at a regular clip, you know I’m a runner. I run because it feels good. I run because it’s good for me. I run for Taylor.

This Friday – Saturday (June 1-2) marks the second annual “Loopy for a Cause” on the Green in downtown Davidson, NC. The event, founded by Davidson resident and ultra marathon runner Jeff McGonnell, coincides with Batten Disease Awareness Weekend and raises money for the Batten Disease Support & Research Association (BDSRA). Last year, I saw Jeff circle the town Green for part of his 24-hour “loopy” run. Six weeks removed from an Achilles injury, I had to watch from a golf chair.

This year, I’m free from the orthopedic boot that blessed me with one of the world’s greatest tan lines last summer. So instead of watching from a golf chair, I’m scheduled to run with Jeff from 3-4 p.m. this Saturday, June 2. Last year, Jeff circled the Green 650 times, totaling almost 90 miles. I won’t come close to that, but I’m excited to join Jeff in his amazing efforts.

If you live in the Charlotte area, I hope you’ll come out for at least a portion of this great event! In case watching us circle the town Green isn’t entertaining enough to suit your taste, you’ll also have the opportunity to enjoy a movie on Friday evening – organizers will show “Ferris Bueller’s Day Off”  – and 10 hours of live music on Saturday.

You’ll also have the opportunity to donate to a great cause – the fight against Batten disease. This weekend’s event benefits the BDSRA. If you choose to donate, I’ll wear one of many costumes. You can pay to make me run in a big wig, flowered hat, cape, dress or even a cow outfit!

Once again, I’ll be running from 3 p.m. to 4 p.m. this Saturday, June 2. Come on out and join the fun (bring a chair and a camera)!

Jeff will kick things off at 6 p.m. on Friday and wrap up at 6 p.m. on Saturday (the live music will end at 8 p.m. that night). To learn more, click here.

Tater Tots and Camaros

By Laura Edwards

ourboys 10K 2012Congratulations 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


Chapter ?

By Laura Edwards

Chapter OneFive years ago tonight, 160 people gathered at a private home in Charlotte. All 160 knew my family in some way and that Taylor had recently been diagnosed with something called Batten disease.

Near the end of the evening, my mom, dad, brother, husband and I stood together in front of all of those people. My mom thanked everyone for coming and appealed to their hearts. Lance Johnston, executive director of the Batten Disease Support & Research Association, stepped in, educated the crowd on the disease and appealed to their minds. Finally, with my brother at my side, I made at once the easiest and most difficult speech of my life. I cannot remember the words I spoke – I rarely prepare remarks in advance and did not do so that night – but I remember how they felt. After I closed, my dad, who until that moment had remained silent in the background, stepped forward and read a Father’s Day card from Taylor.

Moments later, that roomful of people donated $40,000 – capping the first of many successful evenings for Taylor’s Tale.

We called it Chapter One.

I’m battle-weary. And I know we’re on borrowed time. But I still believe. And if you are one of the 160 people who shared Chapter One with us – and you’re reading these words now, five years later – that means a part of you still believes, too. My family’s fight has gotten much tougher since that night, but on the other hand, wonderful, amazing things have happened in research, shining a bright light into the dark world of Batten disease. Much of the progress that has been made specifically in the area of infantile Batten disease – the form that affects Taylor – may never have happened if not for the generosity you showed on the night of Chapter One.

We stopped counting chapters after that first night. We don’t know how many chapters we’ll need. But we’re focused on writing the happy ending to this tale, once and for all. And we’ll do whatever it takes to get there.

View Photos from Chapter One

New Video from BDSRA

By Laura Edwards

Please take a few minutes to watch this new video from the Batten Disease Support and Research Association (BDSRA), filmed at the organization’s annual conference in Chicago in August 2010. It’s a wonderful collection of perspectives from families and other individuals deeply affected by Batten disease. I’m featured on the video starting around the 4:30 minute mark. Thank you so much to our friends at BDSRA for creating this great tool in the fight against Batten disease and for allowing me to tell my story. Remember, you can help us fight this tragic disease by spreading the word and also by making a donation here. Thank you for your support!

[vimeo w=400&h=225] The Batten Journey from On Scene Digital Printing on Vimeo.

ourboys 5K

By Laura Edwards

This Saturday marks the fourth annual ourboys 5K to benefit the Batten Disease Support and Research Association (BDSRA). The event starts at 8 a.m. at Harris Road Middle School in Concord, NC. The event includes a 5K walk/run, one-mile fun run, children’s games, activities and a car wash. To register online, click here.

In addition to funding research, BDSRA provides much-needed support services to families all over the world. To learn more, click here.

Learning to Dance in the Rain

By Laura Edwards
My mom and dad first met Cindy and Doug Smith of Winnipeg, Canada at a world symposium for lysosomal storage diseases in Orlando, just months after Taylor was diagnosed with infantile NCL in July 2006. Being like-minded fighters fighting the same fight, they’ve stayed in touch ever since.
Fast-forward two and a half years to an evening in early July of this year. My mom had not made plans to attend the BDSRA conference – the annual meeting during which families of affected children get together to support one another and research grants are announced. On this evening, though, Mom had Winnipeg on the line. Doug Smith urged her to attend the conference, telling her that the work of Taylor’s Tale had helped give hope to children like his son.Not long after that night, Mom boarded a plane for St. Louis, where she would witness the awarding of four more grants for INCL research. Another year of hope.
Just a few short weeks ago, Mom got another call from the Smiths. This time, Brandon had taken a sharp turn for the worse.
Brandon passed away in his parents’ arms on Sunday, Nov. 1. He was 8 years old. When I found out that Wednesday, I cried in my office.
In spite of the miles that separate us, Brandon and his family feel like old friends. We share the same fight. And Brandon, like Taylor – like all of these kids – was a fighter. Batten disease is tragic; after the diagnosis, there’s never an easy day. But Taylor always reminds me how to smile, just as Brandon did for his family and all those who knew him. In the words of his mom, Cindy, “He taught us to dance in the rain. Life is not waiting for the storm to pass. It’s learning to dance in the rain.”
Brandon fought till the very end, and I will, too. I’ll fight in honor of his great courage and to bring hope to the children we can still save. We couldn’t do it quickly enough for Brandon, but we’re close. Let his story inspire all of us to keep dancing in the rain.
Click on the links below to read two beautiful articles about Brandon and his family’s fight.

Grant Summaries are Online

By Laura Edwards

Summaries of research grants awarded by Taylor’s Tale and our funding partners (Hayden’s Batten Disease Foundation Inc. and the North American and Australian chapters of BDSRA) last month are now posted on our website. Click here to learn more!

The Fight for a Cure: Another Year of Groundbreaking Research

By Laura Edwards

Last night in St. Louis, Taylor’s Tale helped make it possible to award one-year grants to four talented research teams from the University of Texas Southwestern at Dallas (led by Sandra Hofmann, MD, PhD, whose work we’ve funded for the past two years), Washington University in St. Louis, the University of Missouri and the National Institutes of Health.

These projects will help us move closer to a cure for children with infantile NCL, the form of Batten disease from which Taylor suffers.
On behalf of Taylor’s Tale, I’d like to thank our funding partners in these endeavors: Hayden’s Batten Disease Foundation Inc. and the Batten Disease Support and Research Association (BDSRA) North American and Australian chapters.
I also want to thank all of our donors, who’ve given me the gift of hope and a very real belief in our ability to write the happy ending for which we’ve been desperately searching since July 24, 2006 – the day of T’s diagnosis. That day, my family cried in each other’s arms, but before the tears dried, we’d gathered the resolve to fight for a little girl who deserves nothing less. We couldn’t do it without you; love to you all.