Author Archives: Betsy Clarke
Submitted by Taylor’s Tale North Carolina’s Leadership Enhances National Rare Disease Initiatives When Governor McCrory signed the legislation enacting the North Carolina Advisory Council on Rare Diseases on August 5, 2015, the state claimed a leadership role by creating the first such council in the country. By passing the legislation unanimously, the General Assembly … Continued
Contact: Taylor Holgate (Burr) 202-228-1616 Wednesday April 6, 2016 WASHINGTON – Today, Senator Burr (R-NC) spoke before the Health, Education, Labor and Pensions (HELP) Committee on the need for rare disease treatments. WATCH: Sen. Burr speaks on treatments for rare diseases Senator Burr highlighted the example of Taylor King from Charlotte, NC who suffers … Continued
Laura King Edwards will run the Martha’s Vineyard 20 Miler Road Race in honor of her younger sister Taylor.
Sharon King Daniel S. Levine, producer of RARECast on Global Genes RARE Daily, interviews Sharon King, rare disease advocate and president of Taylor’s Tale, and Tara Britt, associate director of the newly created North Carolina Rare Disease Advisory Council, about the development of the legislation that created the advisory council on rare diseases in North … Continued
On October 16, 2015, CBS Evening News aired a story on Lori Sames’ search for a cure for her daughter, Hannah, who suffers from Giant Axonal Neuropathy disease (GAN), a rare disease which causes nerves to die and muscles to stop working. Lori and her husband, Matt, founded Hannah’s Hopeto raise money to fund the … Continued
Law Will Establish an Advisory Council on Rare Diseases at the University of North Carolina at Chapel Hill