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 and supported historic legislation 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.
Governor McCrory Signs Bill:
NC Council on Rare Diseases Becomes a Reality!
On August 6, 2015, Governor Pat McCrory signed North Carolina House Bill 823 into law, making the legislation that Taylor’s Tale proposed and supported a reality. This legislation received unanimous approval by both houses of the North Carolina General Assembly.
What will the bill do?
The goal of the NC Advisory Council on Rare Diseases 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 recommend a plan to encourage innovative ideas, foster entrepreneurship and unite the state’s research universities, biotech industry and the rare disease community. The Council’s members, who will be appointed, will include a broad spectrum of rare disease advocates:
- A physician with experience researching, diagnosing or treating rare diseases
- A medical researcher with rare disease research experience
- A registered nurse or advanced practice registered nurse with experience treating rare diseases
- One rare disease survivor
- One rare disease foundation representative
- One representative from each academic research institution in North Carolina that receives any grant funding for any rare disease research
Taylor’s Tale is grateful to the bill’s supporters and primary sponsors: Representatives Becky Carney, Marilyn Avila, Beverly Earle and Dan Bishop and Senator Louis Pate. The legislation gained momentum following the North Carolina Rare Disease Legislators Breakfast hosted by Taylor’s Tale 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 the public health and economic development opportunities in North Carolina. During the event, King proposed the development of the NC 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.