There are several groups that provide help and resources for parents of children experiencing infantile spasms. Below is a list of three groups, but a full list of international groups can be found here.
The TSC Alliance’s goal is to find a cure for TSC while improving the lives of those affected. It does this through supporting research, raising awareness, helping people living with TSC access better quality care, and by advocating for the TSC community. Visit the group’s website for information on infantile spasms in TSC, as well as to access its TSC Navigator, a new online tool to help people on their TSC journey.
Child Neurology Foundation
The Child Neurology Foundation connects people from all areas of the child neurology community to help those navigating the journey of disease diagnosis, management and ongoing care. For more information about neurologic conditions and infantile spasms, the signs and symptoms, causes, testing and treatment, visit the group’s website here. You can also request help from a Peer Support Specialist who will be able to advise on next steps if you have seen infantile spasms in your child.
Infantile Spasms Action Network
Made up of 32 national and international non-profit organizations, the Infantile Spasms Action Network was created to increase awareness and education of the condition, and ultimately STOP Infantile Spasms. The network’s website includes helpful resources for families and physicians, multiple videos showing what infantile spasms can look like, and links to groups in countries around the world dedicated to helping the child neurology community.