Infantile Spasms Awareness Week 2021
A coalition of organizations (including CURE Epilepsy) recognizes the sixth annual Infantile Spasms Awareness Week (ISAW), a critical opportunity to educate the public about infantile spasms (IS).
This year CURE Epilepsy has created new content to spread awareness of IS. Check out our new content as well as resources and information about IS below:
- A new episode of Seizing Life® featuring a panel of experts who bring a range of knowledge, perspectives, and experiences with IS. The panel includes Dr. Renee Shellhaas, a Pediatric Neurologist and Director of Research at CS Mott Children’s Hospital at the University of Michigan, Kari Rosbeck, the President and CEO of the TSC Alliance, and one of the founders of the Infantile Spasms Action Network, Beth Dean, the CEO of CURE Epilepsy, and Kelly Cervantes, Chair of CURE Epilepsy’s Board, and mother of a child who was lost to infantile spasms.
- A new CURE Epilepsy Discovery featuring new research findings on infantile spasms from Dr. Aristea Galanopoulou of Albert Einstein College of Medicine, a member of the CURE Epilepsy Infantile Spasms Initiative.
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 alike 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 Awareness 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. In 2013, grants were awarded to a team of investigators through a groundbreaking, multi-disciplinary ‘team science’ initiative to advance research to find a cure for this devastating condition. Collectively, the investigators studied the basic biology underlying IS, searched for biomarkers as well as novel drug targets, and developed improved treatments.
The CURE Epilepsy Infantile Spasms Initiative generated 19 publications to date, 7 additional manuscripts in preparation, 3 federal grants from the National Institutes of Health (NIH), and even a patent, published in October 2018. Read more.
Get the Facts about Infantile Spasms
Check out the Seizing Life® podcast episode “Infantile Spasms: Awareness, Observation, and Intervention”
Review our infantile spasms FAQ
View our webinar on the Diagnosis and Treatment Challenges of Infantile Spasms
Share this graphic/PDF on how to STOP infantile spasms
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.