Missing Taylor

By Laura King Edwards

I have a four-month-old baby, and his daddy has the flu. Between my housemates, a full-time job, Taylor’s Tale work and promotion for my new book, “Run to the Light,” I didn’t get much sleep this week.

That’s why, when I crawled across the timing mats with 1,000 other runners at this morning’s Charlotte 10 Miler, I didn’t expect much. After John tested positive for the flu (yes, he had a flu shot) last night, I took our son, stuffed items I thought we’d need into a haphazard collection of bags, and escaped to my parents’ house 11 miles to the northeast. I was pumping after midnight and pumping at 5 a.m. I left half my race gear at home. I had a million things on my mind and exactly zero quality runs in the two weeks leading up to race day.

But though the course changed some for 2019, this race feels like an old friend. I ran its very first edition, in 2012, and I used to win age group awards when the field was smaller. I’ve run other 10-mile races but set my PR (1:17) here. I appreciate how the quiet course, winding mostly over still water and through stands of trees on a greenway, blocks out the chronic injuries and pain that make healthy weeks feel like a blessing, not a given.

My mind wandered as I ran today, mostly toward thoughts of my sister. Some days I’m still surprised to realize that Taylor is really gone, gone to a place I can’t follow, a place where I can’t hold her hand or tell her I love her and know for sure that she heard me.

Taylor died on September 26, and in some ways, the 128 days since her death have felt as if they happened in a different dimension. Jack was born just six days before we lost my sister — I like to think they passed each other on the road to heaven. Meanwhile, I published a book and ran a half marathon blindfolded and went back to my agency job, and somewhere in the midst of all of those things and more, I learned how to be a mom (I’m still learning).

I haven’t had time to miss my sister. But I miss her still. Oh, how I miss that sweet girl.

Last week, I ran with Jack for the first time. Outside, cloaked in the January sunshine, I couldn’t help but wonder whether, if she’d been healthy, his Aunt Taylor would have been beside me, hankering for a turn pushing the stroller. I often try to imagine what kind of person my son will grow to become and whether he’ll love the same things his mother loves. Then I’ll remember I used to do that with my sister before Batten disease, even though I favored shorts and floppy shirts over frilly dresses, while she loved pink and purple and wore lots of jewelry and had more spunk in her little finger than I had in my whole body.

My husband and I will teach our son that life is a blessing. That the best gifts are the gifts we earn, and that we can always find a reason to be happy. I’m sad Taylor didn’t have the opportunities I covet for Jack. I’m sad life on Earth with the people who loved her was such a brief stop on her journey. But Taylor’s loss, and her ultimate sacrifice, are exactly why I recognize the value of each day. I’d give anything to have my sister here with me.

The Charlotte 10 Miler featured a new course this year, with a late climb that made me question racing on battered legs and ankles and feet with four hours of sleep. Instead of walking, I pumped my arms. I pushed to the top. And as I crested the hill, I felt filled with a new sense of purpose to carry me through 2019, the first full year without our sweet T.

It’s good to be back.

Laura and Jack


Real Magic

By Laura King Edwards

Five years ago, I spent five months learning to run without my vision, strapping on a blindfold a couple of nights a week and setting out into the dark world for two or five or nine miles with my friend and guide, Andrew Swistak. And on a chilly November morning, I crossed the finish line of a half marathon course ringed by soaring skyscrapers and cheering people and trees bursting with golden color I couldn’t see.

2013 blindfolded finish

The effort had started out partly as a publicity stunt to support Taylor’s Tale and partly as a unique way to honor my blind sister, who had run her first 5K race on the same course in 2008.  I didn’t realize that the experience – both the race itself and the training it required – would save my own life at a time when I’d nearly given up hope. Hope in the race to save my sister from Batten disease, and hope in my ability to be happy in any phase of my existence even as Taylor was dying.

Taylor's 5K finish

It was such a magical day that I was sure I couldn’t replicate it. So instead of setting a date for my next blindfolded half marathon, I set out to run a race – sighted – in all 50 states. And on the plane bound to Oregon, my first, the following August, I began writing a book.

I finished the manuscript in 10 months, but it took longer to convince a publisher of the audience for a story inspired by one child’s fight against an ultra-rare disease. That word – rare – can be the kiss of death, as so many rare disease advocates know too well. “That’s a really touching story, and Batten disease sure is sad,” says the would-be agent or publisher or donor. “But the world has so many other problems that need fixing.”

As luck or fate would have it, I did find a home for my manuscript, and after what had seemed, to me, a long and torturous journey to turn “Run to the Light” into a real book, my publisher chose the week of the 2018 Novant Health Charlotte Marathon to release it. The Charlotte Marathon, previously known as the Thunder Road Marathon, was where my sister and I had first crossed the finish line as blind runners. I knew that I had to try to recapture the magic of my 2013 race.

Meanwhile, Taylor continued to get sicker, and I wondered how much longer she’d live. When I wrote the epilogue of “Run to the Light” in January 2018, I admitted that I wasn’t sure she’d survive till the book’s publication. And throughout this year, every holiday we celebrated together became another mark on the calendar – a poignant reminder of how my sister bucked the odds.

Along the way, I faced a big life change of my own. The same week I wrote the epilogue, on an unusually snowy night in my pocket of the Carolinas, I learned I was pregnant with my first child. Still, I resolved to run 13.1 miles blindfolded for my sister in November, approximately six weeks after giving birth.

I wouldn’t have to do it alone. In addition to my friend, Andrew, who agreed to serve as my guide again, more than 100 people signed up to run or walk various race distances wearing purple for Taylor. Early on, I thought maybe we could field the biggest team at Charlotte’s biggest race event. I pulled a volunteer committee together to plan race week events and social media and PR strategies, hoping Taylor’s Tale could benefit from my sister’s amazing running story once again.

Then, the sky fell. Right after Labor Day, Taylor was admitted to the hospital with intractable seizures. For the next three weeks, she clung to life with the same spunk I’d seen since she was a fiery toddler who always figured out a way to win, even if her opponent had 40 inches and 100 pounds on her.

But Batten disease always comes out on top, in the end. Six days after my son Jack was born, Taylor took her last breath in an inpatient hospice unit, separated from the labor and delivery room where I’d brought a new life into the world by just a few floors.

My family, of course, could have canceled our marathon plans. We were exhausted and heartbroken, stripped bare before the trees lost their first leaves of fall.

But we didn’t. Instead, we did as Taylor would have done. And this past Saturday, Taylor’s Tale turned Charlotte purple for her. I ran the half marathon blindfolded, crossing the finish line in 2:01. I could credit training that started less than two weeks after Jack and I came home from the hospital, but I know better. No – something else willed my legs and lungs and heart to work like I hadn’t just given birth. Something else showed me the way to the end of a 13.1-mile course I couldn’t see.

Maybe it was my friend, Andrew, the perfect guide. Maybe it was the skills we’d honed in 2013, even more crucial considering we didn’t train together – at all – for this race. Maybe it was my friend, Alyson, my brother, Stephen (running his first half marathon), Steve Gray, whose gene therapy research Taylor’s Tale funded, or runners from Abeona Therapeutics, the company that licensed Steve’s work and will begin treating children like Taylor in an upcoming clinical trial. Together, this group formed sort of a bubble to protect me from falls in the stampede that took over Charlotte’s streets for a few fleeting hours on a picture-perfect fall morning.

untethered running

Maybe, above all else, it was the ghost of an angel – the same angel whose legacy outweighs any physical feat, blindfolded or not – that carried our team to the finish line on Saturday. When I took off the blindfold at the finish line, I hugged my guide and my mother and my newborn son, wrapped in a moment that felt matchless yet strangely familiar. And that’s when I knew:

This was magic.

finish line with Jack


BDSRA Conference Reflections: Writing a Better Story for Children With Batten Disease

By Nicole McEwen

In July, I had the amazing opportunity to go to the Batten Disease Support and Research Association (BDSRA) annual conference, attended by affected families, clinical experts, members of industry, researchers and others. Families come for support and to learn more about the fight against Batten disease and resources for their children. For many families, the conference also serves as their yearly vacation, as they are allowed to bring their children who have Batten disease, as well as their siblings. Experts come to teach, gather data and promote their work.

This year’s conference was a neat opportunity for Taylor’s Tale, as Vice President Laura King Edwards got to speak about her upcoming book and blindfolded half marathon, while she and President Sharon King also networked with key contacts to continue advancing Taylor’s Tale’s important work in research and rare disease advocacy.

So, what was my role in all this?

In addition to supporting Laura, Sharon and Taylor’s Tale, I primarily helped BDSRA with childcare, both for healthy siblings and affected children. I could never quite decide how I felt about the term “affected.” On one hand, it’s true: Batten disease has affected these children, chipping away at some of them so much that it’s difficult to see past their illness. But to me, this word also seems to diminish them, taking away from the fact that they are real people and, in most cases, still kids that have thoughts and feelings, even if they aren’t always expressed in the traditional way.

Regardless of labels, I loved working with those who have Batten disease. We had fun doing a variety of activities, and some of them were so creative that they taught me another way of looking at the world. They came up with new ways to play, or they showed bravery as they barreled through the cluttered room, even though they couldn’t quite see everything. And if they fell down, they got right back up and kept playing.

I connected with siblings, too. Siblings as young as 6 can come on these group outings to fun places. The thing I really liked about this program was that some of the older siblings were in charge of how it ran and where the kids went. I got put in charge of five 6-to-9-year-olds for a trip to the Nashville Zoo.

These were the best behaved 6-to-9-year-olds I have ever encountered. On the bus, we mostly talked about their siblings and why I was coming along. It was really neat for me, as a future Child Life Specialist, to hear what it was like to have a sibling with Batten disease. Since the disease is genetic, each of siblings had also gone through testing to see if they would eventually become affected. It was awesome to hear these kids be so vulnerable: how affectionate they are toward their siblings, but also how scared they were to be tested.

Some of these siblings and their parents were at the conference for the first time, and I couldn’t help but think back to the “affected kids” session, and how hard it must be for families to see their future in that room. Some newly diagnosed kids seemed normal, other than the fact that they had to hold toys right up to their face or ask what they were touching. Others were already using wheelchairs, couldn’t speak and ate through feeding tubes. I could only imagine what it would feel like to recognize that that is what is coming for my sibling or child.

During our time at the zoo, the siblings wanted to see every animal, and we ran through the exhibits to make it back in time for dinner. At the end of the day, the zoo closed down so that we could ride the rides without any lines. This was a fun and special experience for the siblings. My group did everything, even if they were scared, because they live with an example of how to conquer fear every day.

The affected kids had music therapy the following day, and that was something else! In a lot of ways, music can reach everyone, because whether you are moving and dancing to it, singing or just listening, it brings a smile or at least ease of familiarity. Music is everywhere, from commercials and elevators to the grocery store. People use music to get pumped up to run or excited to buy something or able to cry after a breakup.

The music therapist working with the group understood the power of music and left an instrument on everyone’s seat but also encouraged them to move or sing if they wanted. She took requests that ranged from Frozen and Moana to Happy by Pharrell. We sang popular new songs and old songs and danced around the whole room. One girl sang as if she was in an opera the whole time. And the best part? These children, and some adults, were allowed to just let loose and be however they needed to be in that moment.

The BDSRA conference always includes a banquet dinner on Saturday night. The affected children are escorted in by siblings or other volunteers as they are announced by an emcee.

I  wasn’t sure how I felt about this event and struggled with mixed emotions until I was in the middle of it. I had the honor of pushing the wheelchair of an older boy with Batten disease. I managed to get him in the room and lined up with the others on the dance floor before I really looked around. I had been fine when I was just in a room with the affected kids or out with the healthy siblings, but something about seeing these family members side by side, recognizing the love and the loss on each of the kids’ faces (not to mention those of their parents), will stay with me forever.

To my right, one of the older siblings had tears streaming down his face. His sister was probably in her 20s and in a wheelchair in front of him. In that moment, I recognized that he knew what was in store for her, and that there was nothing he could do about it. It took everything I had to hold back the rushing waves of water that wanted to explode down my face. I hurt for every single family in that room at that moment. It was the kind of pain that did not, and probably will not, go away.

The Sibling Dollar dance brought sweet relief after the kids went back to their families and everyone ate dinner. During this annual dance, people donate money to dance with the siblings. I didn’t have high expectations, as it felt like a lot of people in the room were families, but sure enough, most people brought up at least one dollar. In fact, the siblings raised more than $2,000 in the span of a few songs. Even better? Those from my outing group didn’t leave the dance floor. Instead, they kept dancing and smiling and encouraging their families to dance with them. They requested songs, and their parents recorded them. Some parents jumped in on the slow songs and swayed like it was the first time they had held each other in a long time.

There was such beauty and calm in those moments, and finally, I had to go back to my room and sit with my thoughts for a bit. Emotions like those I felt at the BDSRA conference are what will keep me employed on my journey as a Child Life Specialist. Sitting in my empty room after the dance on the final night, I understood my own greatest lesson from the conference: from the creativity and strength of the affected kids, to the energy and perseverance of their siblings, to my own pain of knowing what families will go through as they all stand together, I understand more clearly than ever that all kids and families touched by Batten disease deserve a better story, and we need to do something about it.


Newborn Screening Gets a Boost in North Carolina

By Nicole McEwen

On May 30, North Carolina leaders announced the expansion of the state’s newborn screening panel to include three rare diseases — Pompe disease, Mucopolysaccharidosis type 1 (MPS 1) and X-linked Adrenoleukodystropy (X-ALD). These same leaders are also committed to improving the process for adding conditions to the program in the future. Because of my role with Taylor’s Tale, I had an opportunity to attend the press conference in Raleigh. Here’s my take on the news as well as the importance of newborn screening programs.

Why is newborn screening important? 

Soon after birth, babies are screened for different diseases to ensure that, if needed, they receive early treatment and the best possible quality of life. This, in turn, saves families from much heartache and potentially a huge financial burden.

I graduated from the University of Georgia in May after spending my senior year as a Child Life Specialist intern at the Children’s Hospital of Georgia, where I worked with children and families in a hospital setting. This means I saw, firsthand, the difference this bill will make for babies born in North Carolina.

Imagine a family having to sacrifice their first child to a rare disease in order to understand what’s wrong so that their future children can be tested and treated for that same disease. It sounds awful, but it’s a painful reality: many parents have multiple children born with a particular rare disease, and they are forced to watch one (or sometimes more than one) son or daughter suffer while younger children receive treatment and live a longer, healthier life.

Imagine being a parent in that situation and knowing the medical community could have done something to help your child, if your child had only been screened for the disease early. To boot, the financial burden of your oldest child’s condition could become long and protracted if they need more advanced treatment as their condition declines and the damage becomes irreversible.

Imagine knowing that all of it could have been easily avoided and changed.

That’s where newborn screening comes into play.

With this move, fewer children and families in North Carolina will suffer from lack of early and appropriate treatment. Families will have more time to get to know each other, do meaningful activities together and watch their children grow, so they can make meaningful contributions to a society that allowed them to live.

Everyone stands to benefit here: the child, the family, our healthcare system and our society.

How did the press conference in North Carolina unfold?

We arrived at the state capitol and headed into a room inside the legislative building, where white coats packed into one side of the room and patients and families filled the other. The middle of the room was reserved for press. I stood with Sharon King, Taylor’s Tale president and Taylor’s mother, and Judy Mayer, a Taylor’s Tale board member, to watch the morning unfold.

Sharon King at press conference

Legislators spoke about newborn screening and their excitement for the addition of these three conditions. This is a happy day, they said — for children, for families and for the state of North Carolina. It doesn’t just affect our state, they said. It will set a new precedent for the way we treat newborns and hopefully create a ripple effect across other states. Another mother of a child with a rare disease also came to the podium to share her experience. While her child received treatment, this mother stressed that it would have been much better if it had happened even a few months earlier.

Despite the excitement around the news, it isn’t without detractors. For example, some members of the media questioned the cost of adding conditions to the newborn screening panel. Wouldn’t this raise the price tag of newborn screening for mothers? Wouldn’t additional screenings require more expensive equipment? What would taxpayers think? How many babies do some of these diseases really affect? What are the numbers? Is it worth it?

This is where I believe it’s important to focus on the big picture. After all, many rare diseases are chronic illnesses that cost a lot of money to treat over the long haul in addition to causing a great deal of pain and suffering for patients and families. Catching these diseases early, so that patients can receive meaningful treatment, is far less costly than dealing with the diseases later. Remember, too, that rare diseases as a whole are far from rare. In fact, in North Carolina alone there are approximately one million rare disease patients.

I look forward to watching this crucial work move forward and feel lucky to have witnessed such a big day. However, I know there we still have a lot to do in order to help the public comprehend and see the big picture. The press conference was a crash course in rare disease advocacy, and more than ever, I understand why we can’t ever give up the fight. I look forward to sharing more from my experiences this summer and hope you’ll join Taylor’s Tale, and me, for the ride.


Running the 2018 Charlotte Marathon for Taylor

By Laura King Edwards

In 2013, I put on a blindfold, summoned an ounce of my sister’s courage and ran the half marathon at Charlotte’s largest road race. When I crossed the finish line one hour and 59 minutes later, I knew I could never repeat the magic of that moment.

Mom and Laura at finish line

But I can conjure up a new kind of magic.

That’s why, on November 3, 2018, I’ll run the Novant Health Charlotte Half Marathon blindfolded one more time. I’m thrilled and humbled to get another shot at the experience that inspired my first book (hitting shelves the week of this year’s race) and 2017 TEDx talk.

I hope you’ll help me turn the city purple for Taylor, who completed her first 5K at this event 10 years ago — not long after losing her vision to Batten disease. Today is Global Running Day, making it the perfect time to begin working toward a personal goal (whether that be running your first half or full marathon, finishing your first 5K or simply getting involved in an incredible cause).

Join me at the 2018 Novant Health Charlotte Marathon and run or walk one of five distances:

  • Marathon
  • Half marathon
  • Marathon relay
  • 5K
  • Kids’ 1-mile run

 

IMPORTANT: Sign up at http://bit.ly/run4taylor. When you select your race distance, make sure your team name, ‘Taylor’s Tale,’ is selected.

If desired, you can up the ante by fundraising through your own run/walk or donating to support a friend’s effort. Donate Now

Why will you wear purple for Taylor? Share your own story with us in the coming months by using the hashtag #4taylor on social media. Give us a glimpse of your own training — the good, the bad and the ugly — or tell the world what running for Taylor means to you.

Whatever your speed — run, walk or cheer — I  hope you’ll join us for the race and other events that weekend (stay tuned for details). Happy running (or walking)!


How Taylor Inspired Me to Become a Child Life Specialist

By Nicole McEwen

I’m a recent graduate of the University of Georgia, and I’m excited to intern for Taylor’s Tale this summer. But why am I working for this incredible organization?

For starters, I’ve known Taylor’s incredible family for about five years (I know, I’m quite lucky!). We met through a Charlotte non-profit organization called Playing for Others (PFO). PFO encourages teens to ask themselves two questions: “Who am I, and how will I give of that?” As a member, I explored and developed my own leadership skills through the arts.

But the buddy program, where teens get paired with a person with a disability, was my favorite part of PFO. During my senior year of high school, I had the honor and pleasure of being paired with Taylor.

Throughout that year, I spent time with Taylor and her immediate family. I was amazed that each of them was so strong, driven and passionate. I had never met a group so willing to be courageous and so unwilling to take “no” for an answer. And, I knew I wanted to keep them in my life well after the buddy program ended.

When I was researching colleges, Mrs. King asked me what I wanted to study. I had always liked working with kids, and my three years in PFO showed me that I enjoyed working with people with disabilities as well. However, I didn’t like working with big groups of kids at the same time (ruling out teaching), and I didn’t want to be in charge of kids’ lives (ruling out careers in the medical profession). Mrs. King mentioned that their family worked closely with people called Child Life Specialists whenever Taylor was hospitalized. I had never heard of a Child Life Specialist, so I went home and pulled out my computer to put a Google on it.

Child Life has many parts, and the job changes by day and even depending on the specific floor where you work. But in general, Child Life Specialists (CLS) take care of the psychosocial needs of children and their families during a stressful time. They:

  • Create a sense of normalcy by providing familiar things to do to make the setting less stressful
  • Provide support during medical procedures
  • Guide therapeutic interventions to help children and families cope
  • Provide education in a developmentally appropriate way to help give patients and families control over their situation

 

Child Life? It seemed like everything I’d ever wanted. It would allow me to support children of all ability levels and their families in difficult situations and teach them about their disease or procedure. Most of all, it would allow me to play with kids and have fun doing it.

I chose the University of Georgia because they offer a program that sends four students to the Children’s Hospital of Georgia in Augusta during their senior year to intern as Child Life Specialists. The program gives these four students about three times the amount of clinical hours necessary for certification.

Luckily, I was accepted into the program and completed it this year, graduating in May. Along the way, I got to practice Child Life on six different hospital units. I saw and learned a lot about how hospitalization and different illnesses or diseases affect a child and their family system.

I also decided to apply for an online master’s degree in nonprofit management. I have always loved the non-profit mission and figured that if I ever get tired of hospital life, working in the non-profit setting would be a good way to continue working with my target population. Plus, some of the skills I’ll gain, such as management and grant writing, could help me in the Child Life world. I will start the online program through Northeastern University this fall.

In August, I will sit for my Child Life certification exam, after which I can begin working full-time as a Child Life Specialist. That means I’ll spend much of my summer studying.

But I wanted to do something meaningful with the rest of my time at home in Charlotte, and I’m so glad Taylor’s Tale invited me to become part of the team. This internship will be a great way for me to:

  • Give back to Taylor’s family for putting me on my life path that I love so much
  • Expand my nonprofit skills and knowledge before starting my master’s degree work
  • Continue to advocate for children and families, even if I’m not at their hospital bedside

 

The official start of summer is still weeks away, yet I’ve already jumped into many different pieces of Taylor’s Tale and the rare disease advocacy world. I look forward to being part of this amazing organization and population of humans. This may be my first post, but it certainly won’t be my last, and I hope you enjoy my perspective on the things I experience this summer.


Taylor’s Tale Engages Rare Disease Community in New Patient Information Portal

By Judy Mayer

As we support the development of treatments for Batten disease, Taylor’s Tale continues to advocate on behalf of the rare disease community. We believe that a cure for one is a cure for all.

So when the opportunity to engage the rare disease community in important work that will help patients around the globe presented itself, Taylor’s Tale didn’t hesitate to sign on.

Taylor’s Tale Co-Founder and Vice President Laura King Edwards shares her advice as a rare disease patient advocate during the North Carolina Rare Disease Patient Information Portal focus group held in Charlotte on May 15.

Taylor’s Tale Hosts Focus Group

The first tangible result of this commitment was sponsorship of a focus group with 13 rare disease patients and advocates on May 15.

The focus group, which included Taylor’s Tale President Sharon King and Vice President Laura King Edwards, addressed a major initiative called the North Carolina Rare Disease Patient Information Portal, a web-based, open-access portal.

The portal offers open and easy access to rare disease patients and their families and caregivers as they seek information and identify valuable resources. As a one-stop solution, the portal reduces the time-consuming need to monitor the avalanche of data shared across the internet and via clinical literature.

The portal also addresses the human need for people to connect as they engage in the constantly changing journey of rare disease treatment. The goal is to replace isolation with a supportive community of people who understand the challenges and needs of rare disease patients and their families.

The portal is a component of the North Carolina Rare Disease InfoHub, a major project led by a collaboration of the state’s universities to accelerate innovation in rare disease treatments and to improve care for rare disease patients. The InfoHub leverages the power of advanced computing and big data analytics to search, organize and present medical and treatment resources via its Patient Information Portal.

InfoHub Seeks Rare Disease Patients’ Feedback

The InfoHub’s Patient Information Portal is scheduled for its official launch in late 2018. During the development phase, the rare disease community is actively engaged to ensure the portal is easy to navigate and provides quality information that meets their needs.

Rare disease patients and their families and caregivers are encouraged to share how the site could be more responsive and useful. Visitors are encouraged to access the portal at https://rarediseases.oscar.ncsu.edu to leave comments in feedback boxes.

For more information about the Patient Information Portal focus groups, please email ncrarediseasecoalition@gmail.com.

Taylor’s Tale President Leads Focus on Patient Needs

The North Carolina Rare Disease Coalition is coordinating a series of Patient Information Portal focus groups across North Carolina. As chair of the Coalition and president of Taylor’s Tale, Sharon King assumed a leadership role in ensuring that the InfoHub project always keeps the patient front and center in its work.

Taylor’s Tale President Sharon King (center) listens during a North Carolina Patient Information Portal focus group in Charlotte.

“The patients are the real experts in their diseases,” King said. “They live with disorders every day that healthcare professionals may only see once in their careers. It is vitally important that the portal connects people and provides efficient access to resources that will provide answers to inquiries regarding the diagnosis, treatment and quality of life of rare disease patients.

“We are conducting focus groups in rural and urban areas and inviting people with a variety of backgrounds and diseases,” King said. “Rare diseases know no geographic, ethnic, racial, gender or income barriers. They are equal-opportunity destroyers of lives. As patient advocates in partnership with academia, industry and government, we are making real progress in providing real treatments for real people.”


Join Taylor’s Tale as a Force for Good on World Rare Disease Day

By Judy Mayer

Today is World Rare Disease Day. Unlike a typical holiday, the namesake of this occasion is anything but good or happy.

Yet as a Taylor’s Tale volunteer, I have learned that this day is a celebration of goodness and hope. It is a celebration of the millions of dedicated people who comprise the rare disease community….the healthcare providers, researchers, caregivers, families, and most importantly, the rare disease patients who bravely face each day with a steadfast commitment to see a better tomorrow.

United with our supporters and advocates, we are most definitely individual and collective forces for good.

What is World Rare Disease Day?

Founded by Eurordis in 2008 and brought to the United States by the National Organization for Rare Disorders the following year, Rare Disease Day unites patient organizations from around the world that work hard year-round to raise public awareness of and funding for rare diseases. It is a day of special events for very special people.

This day also provides a targeted opportunity to educate elected officials and other public policy makers, industry leaders, researchers and healthcare professionals about the dire impact that rare diseases have on the lives of patients and their families.

Rare Disease is a global public health imperative.

The numbers are overwhelming: worldwide, an estimated 350 million people live with a rare disease. In the United States, one in 10 people suffer from one of at least 7,000 rare diseases, some with devastating consequences.

The reality is clear: rare diseases are not so rare after all. Nor do rare diseases recognize geopolitical borders. Rare diseases represent an equal-opportunity destructive force that is shared by humanity.

Even small organizations like Taylor’s Tale are key to this global call-to-action. We participated in a consortium with other patient organizations in the United States and Ireland to raise funds in support of gene therapy research at the University of North Carolina. And, an international collaboration of scientists conducted the research.

Rare disease progress comes day by day.

While we may only recognize World Rare Disease Day once a year, progress continues on behalf of rare disease patients due to the hard work conducted every day by their advocates and caregivers.

Just a few weeks ago, Abeona Therapeutics announced that the Food and Drug Administration granted crucial Orphan Drug Designation to the gene therapy treatment for infantile Batten disease that Taylor’s Tale helped fund at the University of North Carolina. The Orphan Drug Designation helps accelerate the timeline for conducting human clinical trials while maintaining the standards that protect patients.

Taylor’s Tale founders Sharon King and Laura King Edwards were cited by the Batten Disease Support and Research Association (BDSRA) for their contributions in advancing this vital research.

Rare disease patients need our attention every day.

Like most special-designation days, World Rare Disease Day is intended to highlight our particular cause. The day serves to galvanize our community and, hopefully, to attract much-needed attention to the public health imperative of rare disease.

On this day, we will acknowledge our steps toward progress in providing viable treatments for rare diseases. We will re-commit to advocating for public policies that improve the quality of life for patients and their loved ones. And we will agree to keep fighting, because we must.

You can help this work by remembering that rare disease is not one day a year…it’s every day, every year for those whose lives are forever changed by a devastating diagnosis like Batten disease.

You can help us spread the word that attention must be paid, and that every life touched by a rare disease…regardless of where in the world…matters. You can join us to be a force for good for all rare disease patients.

Photo courtesy of Viriya Riyakum/Shutterstock.com


Embracing the Art of Living

By Sharon King

It has been one of those weeks — a week of busyness, stress and grief. Some (okay, a lot) of it was self-imposed, yet I let it cloud my focus on the precious things that I should have been doing.

So, here I am on this cool and gray weekend morning reading — really reading — the messages and love notes friends sent to Taylor in celebration of Valentine’s Day. As I read their many thoughts and memories, I’m overwhelmed with the love, kindness and appreciation for my sweet girl. Each letter touches my heart in a special way.

There is a beautiful and frame-worthy drawing from Taylor’s cousin, Morgan. The drawing is bursting with Taylor’s preferred purple and pink.

Cousin Madi described Taylor using each letter of her name: Terrific, Appreciated, Youthful, Lovely, Optimistic and Resilient. Right on, Madi — I agree! Taylor has a lot to share about the value and power of optimism. I wish more people could know her and benefit from this important lesson. Talk about changing the world. And resilience? I’m immediately reminded of visitors to our home after Taylor lost her vision. Taylor would dash around and run up and down the stairs without her white cane. I always got a quizzical look that said, “I thought she was blind.”

Our friend, Linda Talmadge, has long served as Taylor’s “Director of Mischief,” and her leadership skills have not gone unnoticed. In her three-page letter, Linda shared memories of catching a five-pound bass on a hot summer afternoon in the Ormond family pond. I’m not sure we expected to catch anything, but we did, and we ate it.

big fish

Linda also assumed the role of assistant to Taylor’s physical therapist and occupational therapist when needed. When Taylor struggled with aquatic therapy, Linda showed up wearing her bathing suit, jumped into the water and sang the Carolina fight song as she helped Taylor walk in the pool.

There were the afternoons when Linda and Taylor danced around the house to “Go You Chicken Fat, Go.” (You’ll only understand if you were a child in the 1960s.) There were trips to peach orchards (it’s therapy when you reach overhead and pluck the peaches from the branches) and strawberry fields, where we picked buckets of berries. Those orchard trips always happened in the name of therapy, but the fruit was certainly a bonus. We made bread (stirring is therapy!) and Rice Krispie treats, because again, it’s good therapy. Eating all of the treats also served as emotional therapy. And as for all of those sunny afternoons filled with singing to Linda’s harmonica accompaniment…’nuf said.

I wish that I could single out each and every card and note Taylor received in this post. When I read the message from our longtime family friend, Polly, I smiled thinking of Taylor dancing on Polly’s hearth.

Thanks also to the folks at Abeona Therapeutics for the many cards and messages of care and encouragement. Abeona is named for the Roman Goddess who protects children. Thank you for being a testament to your namesake.

I’ll end with Linda’s closing thoughts to Taylor:

Taylor, I could write forever for I have had a front row seat watching you grow up. You showed me the joy there is in celebrating the moment and having fun just for the sake of savoring the day. There is freedom in not worrying what others think, or what tomorrow may bring or what society may view as important. There is love in holding hands, being together and sharing secrets. There is peace in simply embracing the art of living.

I knew freedom, joy and love before my friendship with you began. You taught me that they can come at unexpected times from unexpected places. Perhaps that is life’s greatest lesson.

Respectfully submitted,

VP of Mischief

Linda Love Talmadge

Linda and Taylor