Infantile Spasms Awareness Week (ISAW)
Together We Can STOP IS!
Although awareness efforts are year-round, Infantile Spasms Awareness Week (ISAW) is held annually on December 1-7.
Infantile Spasms (IS) are a medical emergency. Infantile spasms are a rare, but very serious type of seizure. Infantile spasms are caused by a condition in a baby’s brain and include repetitive, but often subtle movements—such as jerking of the mid-section, dropping of the head, raising of the arms or wide-eyed blinks. IS can be misdiagnosed as colic, reflux, or a startle reflex.
During ISAW, the Infantile Spasms Action Network (ISAN) does a concentrated awareness effort centered around the STOP Infantile Spasms mnemonic. With the mnemonic as the centerpiece for awareness, we have reached over 195 million due to the collective efforts of ISAN.
See the signs: Clusters of sudden, repeated, uncontrolled movements like head bobs or body crunching.
Take a video: Record the symptoms and talk to your doctor immediately.
Obtain diagnosis: Confirm an irregular brain wave pattern with an EEG test.
Prioritize treatment: End spasms to minimize developmental delays
Every day you delay increases your child’s risk for brain damage.
Know the signs to ‘STOP’ Infantile Spasms. Identifying spasms is critical for parents, caregivers and providers.
We’re raising awareness about Infantile Spasms in hopes of a brighter future. Awareness leads to opportunity!
ISAN looks forward to more engaging awareness efforts this year! Help us spread the word! The messaging below can be shared on social media or in other partner communication networks. Please use this site ISweek.org and #ISAW2022.
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Download the 2022 ISAW Partner Toolkit
- The following key messages provide ISAW outreach and
offer guidance on how to communicate about the awareness week.
- The following key messages provide ISAW outreach and
Infantile Spasms Action Network
In 2015, CNF partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year IS awareness and education initiative. IS efforts are showcased during ISAW. In 2016, CNF convened two forums that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise IS awareness. Today, this group has grown into a collaborative network of 32 national and international entities focused on raising awareness for infantile spasms.
Questions about ISAN? Want your organization/company to get involved?