Infantile Spasms Action Network (ISAN)

In 2015, the Child Neurology Foundation and the TSC Alliance^® partnered to lead a multi-year infantile spasms (IS) awareness and education initiative, focused on promoting an annual Infantile Spasms Awareness Week from December 1 to 7.

In 2016, two forums were held to bring together epilepsy advocates and leaders from additional provider member societies. Participants discussed a comprehensive strategy to raise IS awareness, resulting in forming a new coalition called the Infantile Spasms Action Network (ISAN).

Today, ISAN has grown into a collaborative network of 39 national and international entities focused on raising awareness about infantile spasms. Each year during IS Awareness Week, ISAN members join together to educate the general public and first-line medical providers about the importance of prompt and early diagnosis of the disorder.

ISAN is overseen by a shared governance steering committee, which currently includes the TSC Alliance (fiduciary and communications), CURE Epilepsy (membership) and the Dup15Q Alliance (website). If you are an organization interested in joining ISAN, please email contact@infantilespasms.org.