Infantile Spasms Awareness Week Recognized from December 1-7
The Infantile Spasms Awareness Network (ISAN), a coalition comprising 37 organizations from around the world, recognizes the first week of December as the Tenth Annual Infantile Spasms Awareness Week (ISAW). The coalition intends to use this week to raise understanding and awareness of infantile spasms through educational initiatives, providing information to healthcare providers, caregivers, and the public.
Initiatives scheduled to take place during ISAW include campaigns for social media, national and local media, physician awareness projects, and events scheduled for the American Epilepsy Society 2024 Annual Meeting. A focus of the ISAW is to increase awareness of the signs and symptoms of infantile spasms, which can be more difficult to identify than other types of seizure. ISAN is promoting the use of the STOP mnemonic tool to improve infantile spasm recognition and care:
- See the signs
- Take a video
- Obtain diagnosis
- Prioritize treatment
Among the 37 partners of the ISAN are the following organizations:
- The American Academy of Neurology
- The American Epilepsy Society
- The Child Neurology Society
- The Child Neurology Foundation
- The American Academy of Pediatrics
- The American College of Emergency Physicians
- The Association of Child Neurology Nurses
- The TSC Alliance
- The National Organization for Rare Disorders
"Infantile spasms are a medical emergency and can cause permanent brain damage if not treated immediately," said Kari Luther Rosbeck, President and CEO of the TSC Alliance. "Infantile Spasms Awareness Week is a concerted effort to educate parents and healthcare providers about the importance early diagnosis and swift treatment, which can protect children from severe developmental challenges."