Role of Advocacy Organizations in Seizure Action Plans, Seizure Education

"We have resources on there. We’re also linking out to the Epilepsy Foundation’s resources as well as specific resources just for the very severe cases.”

As a way to raise awareness of the importance of seizure action plans (SAPs), the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome (LGS) Foundation, and Tuberous Sclerosis Alliance came together to launch the inaugural SAP Awareness Week, an initiative that was held from February 8 to 15, 2021. The collaboration of the 3 advocacy organizations, titled the SAP Coalition, featured a social media campaign and new website designed to highlight the need for these plans for patients with epilepsy, especially should an emergency occur.

In efforts to continue these ongoing conversations, NeurologyLive hosted a roundtable discussion with multiple notable leaders within the epilepsy community. Scott Perry, MD, co-director, Jane and John Justin Neurosciences Center, Cook Children’s Hospital; Orrin Devinksy, MD, director, Comprehensive Epilepsy Center, NYU Langone; and Tracy Salazar, PhD, executive director, LGS Foundation, all participated in the multi-segment conversation.

In this fifth segment, Salazar gives her thoughts on the benefits of utilizing an advocacy organization as a resource when constructing or updating an SAP. She also details how their role can be crucial for both a parent and patient perspective.