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Gene therapy researchers find viral barcode to cross the blood-brain barrier

February 9, 2018
UNC School of Medicine scientists led by Aravind Asokan, PhD, reveal how certain gene-carrying AAV vectors can penetrate the brain more efficiently to treat brain and spinal cord conditions, while reducing liver payload.

Promising Results with New Gene Therapy Approach for Treating Inherited Neurodegenerative Diseases

August 5, 2016
Approach developed in part by UNC’s Dr. Steven Gray restored enzyme function and extended survival time in treated mice.

N.C. Council on Rare Diseases Spotlighted in Washington D.C.

April 12, 2016
 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...

Sen. Burr Fights for Americans Suffering from Rare Diseases

April 8, 2016
 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...

Runner carries a sister’s love every step of the way

February 16, 2016
Laura King Edwards will run the Martha’s Vineyard 20 Miler Road Race in honor of her younger sister Taylor.

Dr. Steven J. Gray Recipient of Health Care Heroes Award

February 16, 2016
Triangle Business Journal on Monday announced the 21 winners for its of the 2016 Health Care Heroes Awards.

RareCast Interview: North Carolina Seeks Leadership Role in Combating Rare Diseases

December 9, 2015
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...

Rare Disease Advisory Council Appointments Confirmed

December 9, 2015
Dr. Bruce Cairns, John Stackhouse Distinguished Professor of Surgery and Director of the North Carolina Jaycee Burn Center in the UNC School of Medicine, serves as Chair of the Council.

CBS News: A Mother’s Quest to Find Cure for Rare Genetic Defect

October 19, 2015
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...

Charlotte Charity Inspires New Law Designed to Spur Treatments for Rare Diseases and Economic Growth for North Carolina

August 13, 2015
Law Will Establish an Advisory Council on Rare Diseases at the University of North Carolina at Chapel Hill