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Steamboat Magazine

Woman to Run Steamboat Springs Half Marathon in 50-State Quest to Save Millions Fighting a Rare Disease

05/16/2016 10:05AM ● By Dan Greeson

CHARLOTTE, N.C. – Taylor King, 17, ran two 5K races after losing her vision to a rare, fatal condition called Batten disease. Now her older sister, Laura King Edwards, is running in all 50 states to honor her and help save one in 10 Americans fighting a rare disease. Edwards will run Colorado’s Steamboat Half Marathon on June 5, making Colorado state number 13 in her quest for 50.

“After her diagnosis, Taylor could have quit, but giving up was never in her DNA,” said Edwards, 34. “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, Taylor overcame blindness to participate in Girls on the Run. 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 vowed to race in all 50 states to save people like her sister. This video shares more about Edwards’ quest. Completed races and states include:

  •         Crater Lake Rim Runs 13-Mile Run, Oregon
  •         Great Smoky Mountains Half Marathon, Tennessee
  •         Great Pumpkin 5K, South Carolina
  •         Thunder Road Half Marathon, North Carolina
  •         Woodlands Half Marathon, Texas
  •         Charlottesville Half Marathon, Virginia
  •         Fargo 5K, North Dakota
  •         Kauai Half Marathon, Hawaii
  •         Athens Half Marathon, Georgia
  •         Schuylkill River Loop Race, Pennsylvania
  •         Amity Island Relay, Massachusetts
  •         Auburn Running Festival Half Marathon, Alabama

Edwards, whose story was featured in Runner’s World in 2014, 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 state legislation signed into law in North Carolina in 2015. On May 9, the N.C. House of Representatives voted 115-0 to rename the bill “Taylor’s Law.” The law established the nation’s first Advisory Council on Rare Diseases at the University of North Carolina and has sparked 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.”

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, 17, 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, PhD, at the University of North Carolina. Taylor’s Tale inspired North Carolina HB 823, which in 2015 established the nation’s first Rare Disease Advisory Council at the University of North Carolina School of Medicine. In May 2015, the N.C. House voted unanimously to rename the bill “Taylor’s Law.” Nationally, Taylor’s Tale partners with organizations like Global Genes and Rare Disease Legislative Advocates and has helped advance important federal legislation in the fight against rare disease. For more information:

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.