Sister to run 10-miler in quest to fight Batten disease

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 find a cure for the disease. Edwards will run Manchester’s 10-miler on Aug. 27, marking state number 14 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."

In New Hampshire, Edwards will also be running for the late Nicholas Dainiak, who lost his battle with Batten disease on his 11th birthday in 2014. Nicholas’s parents, Chris Dainiak and Heather Noyes Dainiak, founded Bedford’s Our Promise to Nicholas Foundation shortly after Nicholas’s diagnosis in 2009. Though answers didn’t come in time to save Nicholas, his family and friends continue to work toward a cure for children with the disease.

Like the Dainiaks, Edwards and her family founded a charity, Taylor’s Tale, to help build a better future for children with Batten disease and others fighting rare diseases. As leaders within the rare disease community, Taylor’s Tale and OPTN are moving mountains not just in their hometowns, but across the United States and worldwide.

"Chris and I promised Nicholas we would work tirelessly to find a cure for this little known disease," said OPTN CEO and Co-Founder Heather Noyes Dainiak. "We couldn’t save our son, but the tireless efforts of our team and others, like Taylor’s Tale, are bringing new hope to suffering children and their families. With love and passion, we are keeping our promise."

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 and Nicholas are an inspiration, 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 and has sparked progress in other states across the nation. In June 2016, the law was renamed "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: http://taylorstale.org.

About Our Promise to Nicholas Foundation

Established in 2009 as a nonprofit charitable foundation, Our Promise to Nicholas was founded by Chris and Heather Dainiak of Bedford, after their son Nicholas was diagnosed with a rare, fatal neurological brain disease called Batten disease. Nicholas’s parents promised him that they would work tirelessly to find a cure for this little known disease. As a leader within the Batten community, OPTN started a sister organization, the Batten Research Alliance supporting an un-biased grant application process and bi-annual scientific conference, providing education to families and professionals fighting this disease. With the support of other Batten disease foundations, OPTN offers the opportunity for scientists to come together to create and fund innovative research proposals. These efforts are bringing new hope to those children and families suffering from this fatal neurodegenerative disease. For more information: http://ourpromiseto
nicholas.com.

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 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. 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.