About Us

About the Infantile Spasms
Action Network (ISAN)

United to bring awareness, accelerate diagnosis, and protect infant development

Our Story

In 2015, the Child Neurology Foundation and TSC Alliance® launched a long-term initiative to increase awareness and education about infantile spasms, culminating in the establishment of Infantile Spasms Awareness Week, held annually from December 1–7. By 2016, after two collaborative forums involving provider societies and epilepsy advocates, the Infantile Spasms Action Network (ISAN) was officially formed—a powerful coalition dedicated to amplifying the message and impact of early detection and treatment.

Our Mission

We’re a united network of 42 national and international organizations, including leading epilepsy, neurology, pediatric, and rare-disease groups, all working together to:

Increase public and provider awareness of infantile spasms

Promote early recognition and diagnosis during the crucial early window

Empower families and clinicians with clear guidance and resources

Governance & Leadership

ISAN operates under a shared governance steering committee, ensuring unified leadership and sustained impact. Current leaders include:

Our Impact

Each year, during Infantile Spasms Awareness Week (ISAW), our member organizations unite to spread the critical message: “STOP Infantile Spasms”. Using the mnemonic—See the signs, Take a video, Obtain diagnosis, Prioritize treatment—we have reached over 195 million people, empowering families and frontline medical providers with lifesaving knowledge

Meet Our Members

We’re proud to collaborate with 42 organizations, such as:

Take Action. Change a Life.

Your voice, your support, and your awareness can make all the difference for a child facing infantile spasms. Help us spread the word and save more lives—starting today.