Infantile spasms (IS) is a rare, but serious form of epilepsy occurring in children, usually under one year of age.
Infantile Spasms (IS) Awareness and Education Initiative
In 2015, CNF partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year Infantile Spasms (IS) Awareness and Education Initiative.
IS efforts are showcased during Infantile Spasms Awareness Week (ISAW), which is held annually during the first week in December. 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 There is help! There is hope! Activities from ISAW 2016 can be found here.
Infantile Spasms Action Network (ISAN)
To further expand the IS initiative, CNF convened two forums in 2016 that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise awareness for infantile spasms. The group now includes over 20 national and international entities and has been dubbed the Infantile Action Network (ISAN). ISAN will meet in August 2017 and is currently developing a mnemonic that will increase awareness and understanding of IS among families, clinicians, and the public. The mnemonic will be introduced during ISAW 2017.
Infantile Spasms Heroes Award
As part of ISAW, the Child Neurology Foundation awards one heroic healthcare professional and his/her medical institution — nominated by a caregiver — with the Infantile Spasms Heroes Award. The IS Heroes Award was established in 2010 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.