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.
Taylor’s Tale hosted the North Carolina Rare Disease Legislators Breakfast in Raleigh on March 25, 2015. State legislators, leaders of the state’s bio-tech industry and representatives of rare disease patient advocacy groups attended the breakfast. Taylor’s Tale President Sharon King was joined by Dr. Jude Samulski, director of the Gene Therapy Center at UNC-Chapel Hill, and Jon P. Stonehouse, president and CEO of BioCryst Pharmaceuticals, to present an overview of public health and economic development opportunities in North Carolina. Read more…