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Advancing Awareness of Epilepsy & Sudden Unexpected Death in Epilepsy (SUDEP)

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Infantile Spasms Awareness Week

Thursday, December 01, 2016 - Wednesday, December 07, 2016
07:00 AM - 05:00 PM
Location: Wherever You Are!

Knowing the signs of infantile spasms is key to getting quick and effective treatment.

Infantile spasms (IS) are subtle seizures occurring in children under age one. While rare, they can cause long-term damage to a child’s developing brain. 

AWARENESS WEEK DETAILS: As part of our continued dedication to raising awareness of infantile spasms, the Danny Did Foundation is part of a coalition of patient-advocacy groups who are participating in Infantile Spasms Awareness Week (ISAW), and we hope you will join. Because infantile spasms can be mistaken for other conditions or appear subtly, prompt diagnosis and appropriate treatment are critical for a child’s best developmental outcome – and that’s why we’re dedicated to raising awareness of this disease.

But awareness is just the first step – we also need more research. The first ever preventive epilepsy trial in the United States specific to infantile spasms in tuberous sclerosis complex (TSC) is beginning. Some researchers believe that by identifying abnormal brain activity prior to the onset of seizures, earlier intervention could prevent infantile spasms or other types of seizures. The study will recruit 80 infants with TSC (infantile spasms occur in an estimated 30 percent of children with TSC) at seven sites across the country.

Efforts like ISAW bring together advocacy organizations, parent/caregivers, industry, and frontline providers to educate the public about infantile spasms. Held December 1-7, the goal is to increase awareness and understanding of infantile spasms through education, research, recognition of exemplary contributions to care and the declaration to patients and caregivers that the future is bright.

Parents/caregivers, physicians and advocacy organizations alike can join ISAW efforts by joining the conversation. 


  • Jerking at the tummy
  • Arm raising 
  • Wide-eyed blinks

SOCIAL MEDIA: Please join us on social media using #ISAW2016



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Danny Did.