From a small group of family and friends who wished to help one young girl, Taylor King, deal with the many awful effects of Batten disease, Taylor’s Tale and our volunteers have transitioned into a positive force that advocates for the millions of people worldwide who are affected by rare disease. We believe that a victory for one is a victory for all.
We’ve contributed to promising scientific research that will help lead to treatments for Batten disease and other rare diseases. While we work on behalf of the one in 10 Americans and the estimated 350 million people whose lives have been tragically touched by a rare disease, we will never lose sight of the individuals represented by those statistics.
The mission that was inspired by the life of one precious girl remains the beacon of Taylor’s Tale to this day, and will continue into the future with your support.
General Assembly Unanimously Approves N.C. Advisory Council on Rare Diseases
On July 28, the North Carolina General Assembly unanimously voted to establish the state’s Advisory Council on Rare Diseases, legislation that Taylor’s Tale proposed and actively supported. The goal of the Council is to advance research and provide treatments for the victims of rare diseases while also reducing health care costs and creating quality jobs in North Carolina. The Council will advise North Carolina’s Secretary of the Department of Health and Human Services on research, diagnosis, treatment and education related to rare disease.
The Council’s membership will include a broad spectrum of rare disease advocates including health care professionals, researchers, representatives of rare disease patient organizations and rare disease patients.
The legislation gained momentum following the North Carolina Rare Disease Legislators Breakfast, which Taylor’s Tale hosted in Raleigh on March 25. State legislators, biotech industry leaders and representatives of rare disease patient advocacy groups were addressed by Sharon King, president of Taylor’s Tale: Jude Samulski, director of the Gene Therapy Center at the University of North Carolina at Chapel Hill: and Jon P. Stonehouse, president and CEO of BioCryst Pharmaceuticals.
The speakers presented an overview of public health and economic development opportunities in North Carolina. During the event, King proposed the development of the North Carolina Rare Disease Advisory Council with an initial goal of positioning the state as a leader in rare disease research and development. She shared that an estimated one million North Carolinians, including her daughter, Taylor, are victims of a rare disease.
Based on the new legislation, which will become law upon receiving Governor McCrory’s signature, the Council will recommend a plan to encourage innovative ideas, foster entrepreneurship and unite the state’s research universities, biotech industry and the rare disease community.
The legislation received bipartisan support as it worked its way through the state legislature. House Bill 823 was filed in the North Carolina General Assembly on April 14 followed by Senate Bill 235 on April 20. Both the House and Senate bills passed their respective chambers unanimously, with the amended bill passing the House on July 28.
Taylor’s Tale is very grateful to the bill’s primary sponsors: Representatives Becky Carney, Marilyn Avila, Beverly Earle and Dan Bishop and Senator Louis Pate.