WASHINGTON, Nov. 14, 2016 /PRNewswire-USNewswire/ -- In advance of Infantile Spasms Awareness Week (ISAW) 2016, 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 2016 Infantile Spasms Heroes Award recipient is Dr. Stephen B. Coker, a neurologist at Central DuPage Hospital, Lurie Children's Northwestern Medicine, in Winfield, IL. 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. Coker was nominated by the Williams Family of St. Charles, IL for his outstanding care of their son Emmett.  In their nomination, they wrote, "Dr. Coker has truly been our angel. Not a day goes by that we don't think of where Emmett could potentially be today had Dr. Coker not immediately gotten us scheduled for an EEG and appointment with him. His compassion and knowledge in delivering the initial diagnosis to us was above and beyond, and made it easier for us to digest what was happening so we could focus on getting Emmett's treatment started right away. Since that day, Dr. Coker and his staff have treated us like family – making themselves consistently available, patiently answering endless questions, and providing us with information that clearly shows a profound understanding of and experience with infantile spasms."

Ellen Wehrman of Mount Pleasant, MI, was announced as the 2016 Infantile Spasms Hope Award recipient. Established in 2015 by the Tuberous Sclerosis Alliance, 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.

Since Ellen Wehrman's son, Charlie, was diagnosed with infantile spasms in 2012, her family has faced the disease with a positive outlook and a tendency toward sharing. Ellen has captured her family's life, with IS and beyond, on her Tumblr blog.  During their journey, the Wehrman family has encountered multiple treatment plans, additional seizure types, and personal struggles like having another child and moving across the country.  According to Ellen's nomination, "The Wehrmans live their life with IS, but IS does not run their lives. They continue to be a positive light to all who are also fighting IS."

A collaborative initiative sponsored by multiple partners, 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. For more information, visit www.ISweek.org.

2016 ISAW partner organizations include the American Academy of Pediatrics, Association of Child Neurology Nurses, American College of Emergency Physicians, American Epilepsy Society, Child Neurology Foundation, Child Neurology Society, Citizens United for Research in Epilepsy (CURE), Danny Did Foundation, Global Genes, Lennox-Gastaut Syndrome (LGS) Foundation, RARE Science, SeizureTracker.com, and Tuberous Sclerosis Alliance.

Infantile Spasms Awareness Week 2016 is supported by educational grants from Lundbeck, Mallinckrodt, and Novartis.

Contact: Jaye Isham, jisham@tsalliance.org, 301-562-9890

SOURCE Tuberous Sclerosis Alliance

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