North Carolina Woman to Run Athens Half Marathon in 50-State Quest to Save Millions Fighting from a Rare Disease
October 14, 2015
Effort Inspired by Runner’s Younger Sister, Who Ran Two 5K Races After Going Blind
Taylor King, 17, ran two 5K races with her Girls on the Run team after losing her vision to a deadly disorder called Batten disease. Now her older sister, Laura King Edwards, is completing a race in all 50 states to help save millions fighting a rare disease.
Edwards, whose story was featured in Runner’s World in 2014, will tally state number nine when she runs the Athens Half Marathon on Sunday, October 25. After a foot injury sidelined her for five months, during which she completed North Dakota’s Fargo 5K in a walking boot, Edwards returned to running at Hawaii’s Kauai Half Marathon in September. She delivered the closing speech at a pre-race VIP dinner that also featured Olympic hopeful Tyler McCandless.
“After her diagnosis, Taylor could have quit, but giving up was never in her DNA,” said Edwards, 33. “The image of my sister finishing her first 5K despite being blind and fighting Batten disease will be with me forever. She inspires me in all that I do.”
As a fifth grader in Girls on the Run, Taylor overcome blindness to run two 5K races. Her courage inspired Edwards to run Charlotte’s 2013 Thunder Road Half Marathon blindfolded, a feat she completed in less than two hours; in August 2014 Edwards launched the effort to complete a race in all 50 states to support the fight against Batten disease and other rare diseases. This video shares more about Edwards’ quest to race in all 50 states.
Edwards co-founded Taylor’s Tale, a non-profit organization dedicated to building a better future for the rare disease community. Taylor’s Tale funds research on Batten disease, a rare genetic disorder. Batten disease attacks an initially healthy child, causing vision loss, cognitive decline and seizures. Progressively, children suffer loss of memory and speech until they are mentally and physically incapacitated; eventually they become wheelchair bound, then bedridden. With no current treatment or cure, Batten disease is always fatal.
Taylor’s Tale is funding leading-edge gene therapy research at the University of North Carolina Gene Therapy Center. The work holds promise for not only Batten disease, but also Alzheimer’s disease, ALS, metabolic disorders and many other diseases. In addition, Taylor’s Tale was the catalyst for historic legislation signed into law by the governor of North Carolina on August 5. The law, which establishes an Advisory Council on Rare Diseases at the University of North Carolina at Chapel Hill, has already sparked similar progress in other states across the nation.
According to the National Organization for Rare Disorders, one in 10 Americans (approximately 30 million people in the U.S.) and an estimated 350 million people worldwide have a rare disease, such as Batten disease. In the U.S., a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group.
“Rare disease impacts more people than HIV and cancer combined,” Edwards said. “People like Taylor are an inspiration to everyone who meets them, and their courage serves as a reminder that while a disease may be rare, hope should not be.”
Edwards writes a blog and recently completed a memoir chronicling her family’s journey in the fight against Batten disease.
About Taylor’s Tale:
Taylor’s Tale is a leader in the fight against infantile Batten disease and other rare diseases. Founded in honor of Charlotte’s Taylor King, 16, Taylor’s Tale raises funds for research, drives public awareness and serves as an advocate for the rare disease community, which includes approximately 30 million Americans and 350 million people worldwide. The public charity has contributed to promising research that will help lead to treatments for Batten disease and other rare diseases; current support includes gene therapy under Principal Investigator Steven Gray, Ph.D. at the University of North Carolina at Chapel Hill. Taylor’s Tale also partners with organizations like the Global Genes Project and Rare Disease Legislative Advocates and has helped advance important legislation in the fight against rare disease. For more information: http://taylorstale.org.
About Batten Disease:
Batten disease is an inherited, fatal neurodegenerative disease that primarily strikes infants, toddlers and school-aged children. Batten disease is the common name for a group of disorders called neuronal ceroid lipofuscinoses (NCL) and belongs to a group known as lysosomal storage disorders. Batten disease attacks an initially healthy child, causing vision loss, loss of cognitive skills and seizures. The symptoms, which result from defective genes, are caused by the buildup of substances called lipopigments in the body’s tissues. As the deposits accumulate, they cause the death of specific cells, called neurons, in the brain, retina and central nervous system (CNS). Progressively, children suffer loss of memory and speech until they are mentally and physically incapacitated, eventually leaving them wheelchair bound, and then bedridden. With no current treatment or cure, Batten disease is always fatal.
Sign up for updates straight to your inbox.