Family and friends of Taylor King founded Taylor’s Tale after Taylor was diagnosed with CLN1 disease, a form of Batten disease, in 2006.
Our public charity has no paid staff. We depend on the support of these dedicated board members, advisory board members and all of our volunteers, friends and donors to help us build a better future for the rare disease community.
Board of Directors
Sharon King, President
Sharon is a thought leader who has united public officials, researchers, biotech and industry representatives, and patient advocates to gain real progress in rare disease treatment development. She is a state-appointed member of the North Carolina Advisory Council on Rare Diseases and chair of the North Carolina Rare Disease Coalition. By day, Sharon also serves as manager of advocacy and community engagement at Aldevron, a leader in advancing biological science.
A graduate of Leadership Charlotte Class XVI and a past member of the Charlotte Rotary, Sharon was honored as one of Charlotte’s 50 Most Influential Women in 2016 and received the Elon Homes and Schools Caring for Children Award in 2013. She has also been nominated for the Global Genes RARE Champion of Hope award.
Sharon is past president of the Charlotte Piano Teachers’ Forum, Symphony Guild of Charlotte and Junior League of Charlotte, and she served on the Boards of the Council for Children’s Rights and the Association of Junior Leagues International. She was a North Carolina Delegate to the 1997 President’s Summit for America’s Future.
Sharon is a graduate of Meredith College with a bachelor of music in applied piano.
Laura King Edwards, Vice President
Laura is an award-winning writer, prolific runner, dynamic public speaker and passionate rare disease advocate. She is the content marketing director at Wray Ward, where she helps major brands craft and deliver compelling, results-driven content. She is a past winner of the agency’s employee of the year award. Previously, Laura worked for Novant Health, an integrated system of physician practices, hospitals and outpatient centers.
In 2017, Laura shared the Taylor’s Tale story on the TEDxCharlotte stage; her memoir, “Run to the Light,” was published in November 2018. With a passion for writing, Laura has a knack for finding unique hooks and telling stories in ways that resonate with target audiences. Her work has been published by many print and digital publications and literary journals. She is the featured columnist for Batten Disease News. Laura is also experienced in crisis communications and is a graduate of the FEMA Advanced Public Information Officer (APIO) program.
Laura was named one of Charlotte’s 50 Most Influential Women in 2019, winning Woman of the Year. She has been nominated for the Global Genes RARE Champion of Hope award. She is a member of the Women’s National Book Association and a past member of the Charlotte Writers’ Club, North Carolina Writers’ Network and Society of Children’s Book Writers and Illustrators. Laura is a past trustee of The Fletcher School, where she chaired the public relations committee.
She is a graduate of UNC Chapel Hill with a bachelor’s in English and a minor in creative writing.
Stephen King, Secretary
Stephen is a supply chain planner at Coca-Cola Bottling Co. Consolidated. Previously, he served as a sales support analyst for M-D Products.
An Eagle Scout and Charlotte native, Stephen graduated from North Carolina State University in 2010, earning a bachelor’s in business administration with a supply chain/operations concentration.
In his free time, Stephen enjoys mountain biking and traveling.
Jane Grosse, CFRE
A certified fund raising executive (CFRE), Jane, a broker and REALTOR® with Helen Adams Realty, is the former vice president of institutional advancement for Elon Homes and Schools for Children.
She trained at the Planned Giving Institute of William and Mary College and the Policy Governance Academy. As a sustaining member of the Junior League of Charlotte, she supports the Charlotte community by promoting volunteerism and mentoring future leaders.
Jane is a graduate of Salem College with a bachelor’s degree.
Charles Edward Hamner, Jr., DVM, PhD
Charles serves as chairman, chief executive officer and president of Hamner Advisory Service, Inc. He specializes in management in the pharmaceutical and health care industries and academic administration. From 1988 to 2002, Charles served as president and chief executive officer of the North Carolina Biotechnology Center, and was a research professor in the OB/GYN department at the University of North Carolina at Chapel
J. Blake Long, MD, MBA
Blake drives innovation in clinical science and health care delivery through both entrepreneurial ecosystem development and capital deployment. As president of Long Health Care Consulting, Blake provides clinical expertise, strategy analysis for both provider and payer markets, and capital acquisition support to early-stage health care companies, innovation groups and investment firms. Today, he concentrates on the delivery of precision medicine including collaboration with Envision Genomics in rare disease, and both Alva 10 and Sapere Bio in precision diagnostics.
Blake previously served as chief clinical officer of Echo Health Ventures, the venture capital/private equity investment group of BlueCross BlueShield of NC and Cambia Health Solutions, providing clinical and strategy expertise to help evaluate investment opportunities and working with portfolio companies on collaboration with providers and insurers. Previously, he served as chief clinical officer of Mosaic Health Solutions. He has served on the Boards of Axis Point Health, FastMed and Citizen’s RX.
Before joining Mosaic, Blake served as a practicing pediatric cardiologist at Savannah Children’s Heart Center and as a clinical professor at Mercer University School of Medicine. He also served as director of life sciences for Ariel Southeast Angel Partners, managing the evaluation and implementation of investments in healthcare and life sciences.
Blake earned his bachelor’s and medical degrees from Duke University. He completed his residency in pediatrics at Walter Reed Army Medical Center and a fellowship at Duke University Medical Center, and he served in Desert Shield/Storm. He received his MBA from Duke’s Fuqua School of Business and now serves as an adjunct professor at Fuqua in the Health Sector Management Program.
Christen L. Mayer, DrPH, MPH, MLS(ASCP), CPH, CIC
An infectious disease and public health expert, Christen is director of infection prevention and control at Tulane Health System in New Orleans, Louisiana.
After graduating from the UNC Chapel Hill with a bachelor’s degree, she earned her master of public health from the University of South Florida and doctor of public health (epidemiology) from the University at Albany, SUNY.
She is a member of the Junior League of New Orleans and APIC Greater New Orleans.
Robert D. Steiner, MD, FAAP, FACMG
Robert D. Steiner, MD, FAAP, FACMG, is editor in chief of Genetics in Medicine. He is also clinical professor of pediatrics at the University of Wisconsin School of Medicine and Public Health. Bob serves as chief medical officer for PreventionGenetics and geneticist and medical director at Marshfield Clinic Health Systems.
Bob most recently served as chief medical officer at Acer Therapeutics. Prior to joining Acer, he was executive director, Marshfield Clinic Research Foundation, chief science officer, Marshfield Clinic, and executive associate director, Institute for Clinical and Translational Research (ICTR, CTSA grant), University of Wisconsin.
He is an active physician-scientist in the field of medical genetics, with specific interests in inherited metabolic diseases including neuronal ceroid lipofuscinosis, metabolic bone diseases, genetic/biochemical/genomic testing and newborn screening. Bob was principal investigator of a groundbreaking research study investigating the safety of fetal neural stem cells for CLN1 disease and CLN2 disease. He was a member of the expert panel convened in 2005 by the Health Research Services Agency (HRSA) that reviewed the status of newborn screening in the United States and recommended expansion of the program to the U.S. Secretary of Health and Human Services. He also served on the IOM Committee that reviewed the acceleration of rare disease therapeutics.
After obtaining his medical degree from the University of Wisconsin, Bob served as resident in pediatrics at the University of Cincinnati/Children’s Hospital and Medical Center, and then trained in medical genetics at the University of Washington in Seattle. He is board-certified in pediatrics, clinical genetics and clinical biochemical genetics.
Rick is a business entrepreneur who has held executive positions in biotech startups, healthcare logistics companies and a research institute. After starting his career at Merck, he joined Genentech in 1986 and contributed to its successful commercial launch. As head of marketing and health economics, he played a key role in the company’s commercialization of drugs for rare diseases.
After leaving Genentech in 1995, he became executive vice president at what is now Amerisource Bergen. As president of the company’s commercial outsourcing/reimbursement business, Rick and his team successfully supported the launch of second-generation biotech companies such as Celgene and Ferring. That division now generates more than $1 billion annually in high-margin revenues.
Rick focused next on building a venture-backed cell products company as chief business officer and managed the integration of two acquisitions; Invitrogen later acquired the company. He spent three years as chief business officer at The Hamner Institutes for Health Sciences, during which he developed an accelerator for startups and supported creation of the UNC Institute for Drug Safety Sciences. While helping with the latter program, Rick spent extensive time in China establishing research collaborations to enhance development of a virtual computer model for drug-induced liver injury, which led to a software spinout called DILI-SYM.
In 2010, Rick became CEO of a pharmacogenomics CRO, setting up a satellite lab in Shanghai’s Zhangjiang Valley. As part of an advisory role with North Carolina State University, he collaborated with business school professors to apply big data analytics to the discovery of new biomarkers. Later, he served as chief commercial officer at Emulate and resumed his collaborative work with N.C. State and UNC Chapel Hill, now focusing on innovations for the diagnosis and treatment of rare diseases. In support of the UNC system’s InfoHub grant, Mr. Williams has also worked closely with the North Carolina Rare Disease Coalition to address the needs of patients and families in rare disease communities statewide.