Rare Leader: Sharon King

The Basics
Name: Sharon King
Title: President
Organization: Taylor’s Tale
Disease focus: CLN1 disease, a form of infantile Batten disease
Headquarters: Charlotte, North Carolina
How did you become involved in rare disease: I never thought much about rare disease until my daughter Taylor was diagnosed in 2006. Since then, I don’t think there’s been a day or hour I haven’t thought about the impact of rare disease on my family, or my child. I think about it globally now. I wake up thinking about it, and go to bed thinking about it.
Previous career: Piano teacher and serial volunteer
Education: B.M. in Applied Piano, Meredith College in Raleigh, North Carolina.

The Organization
Organization’s mandate: Treatment for infantile Batten disease is our focus. We fund CLN1 infantile Batten disease research, and through education, work to build a better world for people living with batten disease.

Organization’s strategy: We have a big vision and a small workforce that doesn’t get a paycheck. We work smart and are very efficiently. We realize we are getting the job done on time borrowed from families, and jobs, and other interests. I’ve got a very sick child. She’s my first priority. We’ve put together the board and leadership to such a degree that if I have to step back from the day to day job of running Taylor’s Tale, the leadership team can move forward.

Funding strategy: Early on we focused on event fundraising, but we realized that event fundraising is tough. It takes a lot of people power, and a lot of expense. In the past five or six years we’ve focused on individual asks and annual asks. Also, we have been putting funding together through an international funding partnership. We did that to fund gene therapy research at Steven Grays’s lab at the University of North Carolina. (Abeona Therapeutics is now developing that program).

What’s changing at your organization in the next year: This year we are adding something new. We realize we talk so much about research that can help future children, but we haven’t said a lot about children who will never benefit from the research. This is my child. Taylor is never going to benefit from the work of Abeona or any other company. One thing we are adding this year, we are raising funds to develop a care management plan modeling on what BioMarin funded for late infantile Batten’s disease when they were working on Brineura (enzyme replacement therapy for CLN2 form of Batten disease). We’ve had some discussions. We’re joining in a partnership with the Batten Disease Support and Research Association. Our plan is to fund it, and for the Batten Disease Support and Research Association to provide personnel and expertise. We’re going to bring together experts on the care and management of infantile Batten disease from the point of diagnosis to end of life care. We believe that even if a disease modifying therapy should come through, this management plan is still a very important part of the circle of support that wraps around families and children. This is a gap in services, and we have to make this happen

Management Style
Management philosophy: We all have to be driven by our mission. We never let our mission out of sight.

Guiding principles for running an effective organization: Focusing on our mission. Making sure we maintain the highest ethical standards because we count on our donors to get our work done. We focus very much on strong communications internally and externally.

Best way to keep your organization relevant: There are so many organization out there with laudable goals. Why should someone care about an organization like Taylor’s Tale with such a small population of children affected by this disease? We focus on our mission and telling our story in a way to that encourages others to care. We talk about the greater rare disease community, that’s who we are, but we always tie it back to our smaller mission.

Why people like working for you: I’m an optimist with a dose of realism. It’s a pretty big goal to want to find treatment and a dream of a cure for children like my daughter. But I absolutely believe it’s attainable. If I don’t believe, we’re not going to achieve it. I think that draws our volunteers inward, and they believe too.

Mentor: My mother, who passed away five years ago. She was always the inspiration. She was an extraordinary human being. She had a great ability to bring people together. I still ask myself, when I’m stuck in a difficult situation, “What would she say or do?” There would be no Taylor’s Tale if it weren’t for my mother. I spent the first month grief stricken, saying “How could this happen to our family?” She told me to come home and had a box of books. She handed me Geeta Anand’s book The Cure about the Crowley family. She said, “Read this now. If this family could do this, you have to do your part too.”

On the Job
What inspires you: Courageous acts.

What makes you hopeful: While it’s never soon enough, or fast enough for me, but I think there’s greater recognition around rare disease now. I feel a greater urgency and feel the greater community, not just the rare disease community, is beginning that rare disease not just a problem that affects the Taylors and Kings of the world, but all of us.

Best organization decision: That we kept Taylor’s Tale going when others thought we should quit. During the economic downturn, I had friends who took me to lunch to get me to quit. “It’s too big a problem,” they said. “It’s not solvable.” The worst of it I heard was, “If you keep this up, you are going to fail. It’s going to tear your heart out. Use this time to spend with your child.” I’m not a good listener, particularly when I don’t like what I’m hearing. That group actually spurred me on and put gasoline in the tank. We raised money in spite of the economy. We thought we’re going to do what we can. We’re going to focus on advocacy.

Hardest lesson learned: That there’s only 24 hours in a day, but somehow, I haven’t learned it yet. Caffeine is my friend.

Toughest organization decision: Whether or not to form Taylor’s Tale. We were operating without being a not-for-profit. The time came to make a decision whether we should do it. We did it, but we knew we were taking on a huge commitment.

Biggest missed opportunity: Keeping people on our team engaged. I remember inviting facilitator to the meeting and she asked board members around the table why they were involved. So many answered, “Because I want to help Sharon,” “I’m sad about Taylor.” It touched my heart, but what I really wanted to hear is that “I’m here because I want to defeat this disease for children now and children down the road.” I felt it was my job to expand their desire. We lost some extraordinary board members and donors because they didn’t get beyond that connection to my family. There’s got to be more. I may be what brings them to the table, but they’ve got to understand the bigger picture why it matters.

Like best about the job: We have the opportunity to change the world for children like Taylor. What’s better than that—a longer life, a better life.

Like least about the job: Fear of failure. The ultimate failure is not reaching our goal for children like Taylor.

Pet peeve: Passive-aggressive behavior and unnecessary competitiveness.

Personal Tastes
First choice for a new career: Write the score for a big musical
Most influential book: The Cure by Geeta Anand
Favorite movie: Sound of Music
Favorite music: Bruce Hornsby
Favorite way to spend free time: Family and friends, and if I could travel more, I’d be in the North Carolina mountains a lot.

November 9, 2017