Infantile Spasms Hope Award and Heroes Award Recipients Announced

Nov 10, 2015, 09:00 ET from Child Neurology Foundation (CNF)

WASHINGTON, Nov. 10, 2015 /PRNewswire-USNewswire/ -- In advance of Infantile Spasms Awareness Week (ISAW) 2015, which will be held annually December 1-7, a coalition of organizations has announced recipients of both the Infantile Spasms Heroes Award and the Infantile Spasms Hope Award. Infantile spasms is a rare seizure disorder that occurs in young children, usually under one year of age. The average age of onset is around four months, but some children may experience spasms as early as one month.  A few children may begin as late as two years. About 2,500 children in the United States are diagnosed each year with infantile spasms; children who develop IS are at great risk for developmental disability and autism, but some children will do well if treated early and accurately. 

The 2015 Infantile Spasms Heroes Award recipient is Dr. John Mytinger, Director of the Infantile Spasms Program at The Ohio State University at Nationwide Children's Hospital in Columbus. The Infantile Spasms Heroes Award was established in 2010 by the Child Neurology Foundation to recognize a deserving healthcare professional for making a positive difference in the life of a child with infantile spasms by embodying the heroic spirit of quality, compassionate, and efficacious care during diagnosis or treatment of IS.

Dr. Mytinger met his first patient with infantile spasms in 2007. Unfortunately, this child's infantile spasms diagnosis was delayed for many months. The consequences of the delayed diagnosis to the patient and his family had a profound impact on Dr. Mytinger's career. After finishing his pediatric neurology residency, neurophysiology fellowship, and epilepsy fellowship in 2012 at the University of Virginia, Dr. Mytinger accepted a position at Nationwide Children's Hospital where he has created a multidisciplinary Infantile Spasms Program in an effort to improve patient outcomes and provide a framework to support caregivers

Dr. Mytinger was nominated by not one but two families. One mother stated she has "yet to encounter another medical professional so willing to give their patients the same level of care." Mytinger was also recognized as "truly an IS fighter...our biggest hero. He saved our son and never turned his back on our family."

Danielle Boyce of Bala Cynwyd, PA was announced as the Infantile Spasms Hope Award recipient. The Infantile Spasms Hope Award honors a family or individual who not only demonstrated courage in the face of their child's diagnosis of infantile spasms, but also has used the experience and shared their story to help generate awareness of infantile spasms and educate other parents facing this devastating form of seizures.

Boyce was nominated for being "a strong woman who is very supportive, compassionate, and caring to all families having to cope with infantile spasms…and being a leader in the infantile spasms community."  Her 5-year-old son Charlie suffered from infantile spasms as an infant.

Boyce holds a BA in political science and a Master's in Public Health with a concentration in epidemiology. She currently works for Johns Hopkins University School of Medicine and has co-authored numerous peer-reviewed articles. She also serves on the board of directors of the Lennox-Gastaut Syndrome Foundation, is an FDA Patient Representative for infantile spasms, is on the Steering Committee for the Rare Epilepsy Network, and conducts family support workshops on a variety of epilepsy-related topics.

A collaborative initiative sponsored by the Child Neurology Foundation and the Tuberous Sclerosis Alliance, Infantile Spasms Awareness Week (ISAW) is held annually from December 1 to 7. The goal of ISAW is to increase awareness and understanding of infantile spasms through the distribution of objective educational materials to providers, caregivers, and the public; the announcement of new and useful research and support initiatives; the recognition of exemplary contributions to care; and the declaration to patients and caregivers that help is available and hope exists.

About the Child Neurology Foundation

After founding the Child Neurology Society in 1972, Dr. Kenneth Swaiman, one of the nation's first pediatric neurologists, established the Child Neurology Foundation in 2001. While the Society is the professional organization for the nation's pediatric neurologists, the Foundation serves pediatric patients through advocacy, education, research, and support initiatives. The Foundation's mission is to improve the lives of children with neurologic disorders by strengthening connections between patients and their families, physicians, other healthcare professionals, and advocacy and industry partners.  For more information, visit www.childneurologyfoundation.org.

About the Tuberous Sclerosis Alliance

The Tuberous Sclerosis Alliance is the only national organization dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected.  TSC is a genetic disorder that causes tumors to form in vital organs; it's also the leading genetic cause of both epilepsy and autism.  About 40 percent of infants with TSC experience infantile spasms.  For more information, visit www.tsalliance.org

Infantile Spasms Awareness Week is supported by educational grants from Lundbeck, Mallinckrodt, and Novartis.

 

SOURCE Child Neurology Foundation (CNF)