Child Neurology Foundation and Tuberous Sclerosis Alliance Announce Infantile Spasms Awareness Week 2015

Dec 01, 2015, 09:00 ET from Child Neurology Foundation (CNF)

WASHINGTON, Dec. 1, 2015 /PRNewswire-USNewswire/ -- Today the Child Neurology Foundation (CNF) and the Tuberous Sclerosis Alliance (TS Alliance) launch Infantile Spasms Awareness Week (ISAW) 2015. Held annually December 1-7, 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.

Infantile spasms (IS) 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. 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. IS can present as repetitive and rhythmic head bobs, and often coincide with developmental regression.

"Most pediatricians will see only one or two IS cases during their careers. Couple that with the potential for severe developmental delay in infants left untreated, and the need for providers, caregivers, and the public to be aware of the urgency of IS diagnosis and treatment becomes a critical priority in the child neurology community," stated Amy Brin Miller, Executive Director of CNF.

"To maximize the impact of ISAW 2015, CNF and the TS Alliance have worked together to prepare educational materials and events that address the need for a multifaceted awareness campaign, which is intended to grow in scope and reach over the next two years," added Kari Luther Rosbeck, TS Alliance President and CEO.

This year's awareness campaign encompasses a wide range of activities to help educate both the general public and the medical community about the importance of quickly diagnosing and treating infantile spasms. These efforts include a continuing medical education (CME) course during the Child Neurology Society's annual meeting, new educational videos from the TS Alliance and the Child Neurology Foundation, a TS Alliance Town Hall Series, educational webinars, a media tour on December 3 as well as an array of events during the American Epilepsy Society (AES) Annual Meeting December 4-7 in Philadelphia. View the complete ISAW 2015 Events Schedule.

In early October, CNF honored Dr. John Mytinger, Director of the Infantile Spasms Program at The Ohio State University at Nationwide Children's Hospital in Columbus, with the 2015 Infantile Spasms Heroes Award, and the TS Alliance recognized Danielle Boyce of Bala Cynwyd, PA as the inaugural recipient of the Infantile Spasms Hope Award.

In addition, CNF awarded $13,000 in mini-grants to families with children diagnosed with IS to pay for therapies not covered by insurance. "Thank you for making this dream a reality! Truly, from the bottom of our hearts, thank you for your generous grant. We have been faithful stewards of those funds and they continue to bless us over and over again. Thank you for the work you do and the care you give to families like us," said one mother whose son was the recipient of an IS mini-grant.

To join the ISAW 2015 campaign, use #ISAW2015 and visit www.ISweek.org.

About the Child Neurology Foundation

The Child Neurology 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. Through the use of advocacy, consumer education, and research efforts, CNF aims to achieve its vision of a world in which children living with neurologic disease reach their full potential. 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 charitable contributions and educational grants from Lundbeck, Mallinckrodt, and Novartis.

 

SOURCE Child Neurology Foundation (CNF)