Infantile Spasms Action Network (ISAN)
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 ISAW. In 2016, CNF convened two forums that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise IS awareness.
Today, this group – the Infantile Spasms Action Network (ISAN), convened by CNF – has grown into a collaborative network of 32 national and international entities focused on raising awareness for infantile spasms. Do visit the websites of these wonderful organizations to see first-hand their commitment to the child neurology community.
2020 ISAN Members: American Academy of Neurology | American Academy of Pediatrics | American College of Emergency Physicians | American Epilepsy Society | Association of Child Neurology Nurses | Be-TSC (Belgium) | Bridge the Gap-SYNGAP | The Brain Recovery Project: Childhood Epilepsy Surgery Foundation | Child Neurology Foundation | Child Neurology Society | CURE Epilepsy| Danny Did Foundation | Duke University Hospital | Dup15q Alliance | Epilepsy Foundation of America | Epilepsy Support Network of Orange County | FamiliesSCN2A Foundation | FundHemi | Global Genes | Hope for HIE | Greenwich Biosciences | LGS Foundation | Mallinckrodt Pharmaceuticals | Mickie’s Miracles | National Organization for Rare Disorders (NORD) | RARE Science | Ring14 USA | Seizure Tracker | Steunpunt Kinderepilepsie | Tuberous Sclerosis Alliance | The UK Infantile Spasms Trust (UKIST) | Upsher-Smith Laboratories | Zogenix
In 2019, ISAN began to transition its governance model to a shared collaborative model; with a steering committee serving as leadership. This model aims to ensure ISAN’s sustainability, as well as utilization of each member’s operational strengths. Therefore, in 2020, organizational member of the steering committee will assume lead on a core function of ISAN, membership services, communication, or meeting services for example. CNF will remain as ISAN’s fiduciary entity; responsible for budgeting, finance distribution and reconciliation.
Questions about ISAN? Want your organization/company to get involved? Contact firstname.lastname@example.org.