Infantile Spasms Awareness Week 2023
Each year on December 1-7, a coalition of organizations (including CURE Epilepsy) recognize Infantile Spasms Awareness Week, a critical opportunity to raise awareness and educate the public about infantile spasms (IS).
Below we have provided some content to provide families with a better understanding of IS.
- Seizing Life® podcast episodes:
- An episode with Dr. Chris Dulla, epilepsy researcher, shares information about infantile spasms – what we know, what recent research has revealed, and how current research may lead to better detection, and treatments.
- An episode with Kate Kostolansky who shares her daughter Charlotte’s infantile spasms diagnosis and treatment journey. Kate explains how these experiences inspired a children’s book designed to help newly-diagnosed families and those around them better understand infantile spasms.
- An episode featuring Monica Diaz-Greco, a mother whose daughter developed IS, responded well to the treatments, and developed other epilepsies as she moved from infant to toddler.
- A recent CURE Epilepsy Discovery, featuring promising research from Dr. John Swann, a member of the CURE Epilepsy Infantile Spasms Initiative.
- A Day in the Life, a short documentary about a day in the life of one family living with epilepsy. Kelly and Miguel Cervantes’ daughter, Adelaide, was diagnosed at 7 months old with infantile spasms, a devastating and difficult-to-treat form of epilepsy. Filmed in early 2019 when Adelaide was 3 years old, this documentary focuses on an average morning in the Cervantes home.
What is Infantile spasms?
Infantile spasms is a rare and particularly severe epilepsy syndrome that typically begins within the first year of life. Infantile spasms is characterized by subtle seizures which can have large neurological effects, potentially leading to developmental delays and cognitive and physical deterioration.
Sadly, many primary care doctors and parents are not familiar with the signs and symptoms of infantile spasms. So, many children with infantile spasms do not receive treatment during the critical window within the weeks and months after the emergence of symptoms.
That’s why it’s critical for everyone to know the signs to STOP Infantile Spasms.
INFANTILE SPASMS ARE A MEDICAL EMERGENCY
Prompt diagnosis and treatment are critical, but this is challenging because infantile spasms can be mistaken for normal baby movements or other disorders that don’t demand urgency.
Watch this 2-minute video to learn what infantile spasms look like — it could save your child’s life.
Source: Infantile Spasms Action Network video, produced by the Child Neurology Foundation
CURE Epilepsy’s Infantile Spasms Initiative
Since 2011, CURE Epilepsy has funded cutting-edge infantile spasms research. The CURE Epilepsy Infantile Spasms Initiative generated 19 publications to date, seven additional manuscripts in preparation, three federal grants from the National Institutes of Health (NIH), and even a patent, published in October 2018. Additionally, research that resulted from the CURE Epilepsy Infantile Spasms Initiative is putting us that much closer to a treatment for IS.
Check out this two-part Seizing Life® podcast episode “Infantile Spasms: A Medical Emergency” and “Infantile Spasms: The Hope of Research”
View our webinar: Diagnostic and Treatment Challenges of Infantile Spasms
Review our infantile spasms FAQ
CURE Epilepsy is proud to be a part of the Infantile Spasms Action Network. This coalition of organizations is committed to raising vital awareness about IS and its impacts on children.