Infantile spasms (IS) is a rare, but serious form of epilepsy occurring in children, usually under one year of age.
Infantile Spasms (IS) Awareness Week
In 2015, CNF partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year IS awareness and education initiative. IS efforts are showcased during Infantile Spasms Awareness Week (ISAW), which is held annually during the first week in December. For reference, activities from ISAW 2016 can be found here. The ISAW 2017 page is currently under development.
Infantile Spasms Action Network (ISAN)
To further expand the IS initiative, CNF convened two forums in 2016 that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise awareness for infantile spasms. The group now includes over 20 national and international entities and has been dubbed the Infantile Spasms Action Network (ISAN). ISAN met in August 2017 and is currently developing a mnemonic that will increase awareness and understanding of IS among families, clinicians, and the public. The mnemonic will be introduced during ISAW 2017.
2017 Members of the Infantile Spasms Action Network: American Academy of Neurology | American Academy of Pediatrics | American College of Emergency Physicians | American Epilepsy Society | Association of Child Neurology Nurses | Bcureful | Belgium TSC | Child Neurology Foundation | Child Neurology Society | CURE Epilepsy | Danny Did Foundation | Dup15q Alliance | Epilepsy Foundation of America | Global Genes | Greenwich Biosciences | Lennox Gastaut Syndrome Foundation | Mallinckrodt Pharmaceuticals | Mickie’s Miracles | National Organization for Rare Disorders (NORD) | RARE Science | Seizure Tracker | Tuberous Sclerosis Alliance | Upsher-Smith Laboratories
ISAW Grants & Awards
Brendan Michael Harnett Mini-Grant
The Harnett Mini-Grant was founded by Mr. Michael Harnett in January 2014 as a memorial to his nephew, Brendan Michael Harnett, who was diagnosed with Infantile Spasms and passed away before his first birthday. Each year during ISAW, one $1,000 mini-grant is awarded to a child with infantile spasms and his caregivers to cover the cost of medical devices, treatments, therapies, or other services not covered by insurance. To learn more, visit the Harnett IS Mini-Grant Application Form page. Nominations for the Harnett Grant are due October 15, 2017.
Infantile Spasms Heroes Award
As part of ISAW, the Child Neurology Foundation sponsors the Infantile Spasms Heroes Award. Since 2010, the IS Heroes Award has recognized a health care professional and his or her institution for making a positive difference in the life of a child with infantile spasms. Nominations are accepted from parents and caregivers who wish to acknowledge a provider who has embodied the heroic spirit of compassionate and efficacious care during diagnosis or treatment of IS. Nominations will be reviewed by individuals from the ISAN. To find out more about the IS Heroes Award and to make a nomination, click here. Nominations for the IS Heroes Award are due October 20, 2017.
Infantile Spasms Hope Award
As part of ISAW, the Tuberous Sclerosis Alliance sponsors the Infantile Spasms Hope Award. The IS Hope Award will honor a family who has not only demonstrated courage in the face of their child’s diagnosis of infantile spasms, but also has used their experience and shared their story to help generate awareness of IS and educate other parents facing this devastating form of seizures. Click here to learn more and nominate a family. Nominations for the IS Hope Award are due October 20, 2017.