ATLANTA (March 12, 2019) – Children’s Healthcare of Atlanta has received designation as a Leukodystrophy Care Network (LCN) Certified Center. As of this month, Children’s becomes one of eight LCN Certified Centers in the country.
Leukodystrophy is a rare genetic disorder with more than 30 known variations, affecting the myelin and glia cells, or white matter, in the brain and spinal cord. Without white matter, nerves in the brain cannot function properly causing a wide range of symptoms. Leukodystrophy affects approximately 1 in 7,000 people.
Hunter’s Hope Foundation, the certifying LCN body, was established in 1997 to address the need for information and research around leukodystrophy. Designation from Hunter’s Hope Foundation as a LCN Certified Center signifies Children’s as a provider of innovative therapies, treatment options, expert care and support for families affected by this disease. The foundation and its LCN Steering Committee created strict requirements, holding LCN Certified Centers to the highest standards of care.
“This recognition and designation is a result of our approach to collaborative and innovative care to improve the lives of children diagnosed with this rare disorder,” said Crystal Liles, Director of Neurosciences at Children’s. “We are proud of the work we have done to earn this designation and the work we will continue to do to find new treatments or cures for our patients with leukodystrophy.”
Symptoms of leukodystrophy, including slow development or loss of skills, decreased muscle strength, stiffness of the arms or legs, imbalance and problems with speech or feeding, can present at any age. Cognitive impairment, seizures, vision and hearing loss, peripheral neuropathy and endocrine problems may also occur, and the rate of disease progression varies from patient to patient.
The goal of the Children’s LCN Certified Center is to provide patients and families with a comprehensive team trained to provide care for these rare and complex diseases. Through education, research, comprehensive care and an overall understanding and support, Children’s strives to improve the lives of the children diagnosed with leukodystrophies.