THE WOODLANDS, TEXAS – Feb. 28. – Where there is a Will, there is a way! Meet the inspirational Will Herndon and his mother Missy at the Woodlands Marathon Saturday, February 28, 2015. Will’s Warriors will run on World Rare Disease Day to support Will, who is fighting a rare disease.
Six years ago, Will and his family received a devastating diagnosis. Will, a loving, bright, energetic 6-year-old, has juvenile Batten disease—a rare, genetic, neurodegenerative disorder. Batten disease attacks an initially healthy child and causes vision loss, loss of cognitive skills, and seizures. 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, often by the late teens or early twenties. Will, now 12, is blind. His family is heart-broken but driven to find a cure.
“We are so blessed to live in a community that has the dedication and commitment to believe that even the impossible can become possible if you truly believe change can be made. I am so grateful for the tremendous support we have received from the families of The Woodlands. There is no doubt in my mind this community is committed and a life-changing discovery will happen,” said Missy Herndon, Will’s mother and founder of The Will Herndon Research Fund at Beyond Batten Disease Foundation.
Click on this link to see Will’s video.
Laura King Edwards, co-founder of Taylor’s Tale, will travel from Charlotte, North Carolina to run with supporters of The Will Herndon Fund. Laura’s 16-year-old sister, Taylor, was diagnosed with infantile Batten disease in 2006.
As a fifth grader, Taylor ran two 5K races despite being blind. Her courage inspired Edwards to run Charlotte’s Thunder Road Half Marathon blindfolded, a feat she completed in less than two hours. Now, Edwards is running a race in all 50 states to support the fight against Batten disease and other rare diseases. She chose the Woodlands Half Marathon as her Texas race because of The Will Herndon Fund and World Rare Disease Day.
“The Will Herndon Fund and Beyond Batten Disease Foundation are moving mountains in the fight against Batten disease,” said Edwards. “I’m excited to join Will’s Warriors in Texas and mark World Rare Disease Day by honoring millions who, like Will and my sister Taylor, are battling a devastating disease.”
Click on this link to see Taylor and Laura’s video.
According to the National Association for Rare Disorders, one in 10 Americans (approximately 30 million people in the U.S.) and an estimated 350 million people worldwide are afflicted with a rare 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. International definitions on rare diseases vary; in the United Kingdom, a disease is considered rare if it affects fewer than 50,000 citizens per disease. Eighty percent of rare diseases are genetic in origin and thus are present throughout a person’s life, even if symptoms do not immediately appear. (Rare diseases are often also called “orphan” diseases.)
“Rare disease impacts more people than AIDS and cancer combined,” Edwards said. “Children like Taylor and Will 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.”
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. 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).
About The Will Herndon Fund at the Beyond Batten Disease Foundation:
Beyond Batten Disease Foundation works to cure and prevent juvenile Batten disease, a rare, inherited neurological disorder that strikes young children, first causing vision loss and seizures, then cognitive and motor impairment, and ultimately death by the late teens or 20s. The foundation raises funds for research and is leading development of an easy and inexpensive, groundbreaking blood test to detect the gene mutations that cause juvenile Batten disease as well as 750-plus, other rare but serious and often fatal childhood ailments. For more information: www.beyondbatten.org.
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 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.