Eventos
Seminario web: Soluciones de baja tecnología para niños con necesidades de comunicación complejas
This webinar, put on in conjunction with the CACNA1A Foundation, is the fourth in our series on Optimizing Therapies for those with DEEs, and will focus on how to read and interpret your child's behaviors as communication within the home. In addition, we will spend time discussing how to shape those behaviors into meaningful forms of…
Seminario web: Soluciones de alta tecnología para niños con necesidades de comunicación complejas
This webinar, put on in conjunction with the CACNA1A Foundation, is the fifth in our series on Optimizing Therapies for those with DEEs, and will focus on the use of high-tech AAC solutions for communication and access to the home environment. We will look at options available for being able to access different toys, home environmental…
Terapia de atenuación del crecimiento: todo lo que desea y necesita saber
Join us to learn more about growth attenuation therapy (GAT) - an intervention to bring on early puberty in order to reduce the ultimate growth of a child. Since 2006, this treatment has been utilized to help caregivers continue to care for non-ambulatory children with severe physical and cognitive delays in their own homes. Those…
CURE Epilepsy Webinar – Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research
In partnership with DEE-P Connections and Partners Against Mortality in Epilepsy (PAME) Sudden Unexpected Death in Epilepsy (SUDEP) affects approximately 1 in 1,000 people with epilepsy, regardless of age 1,2. While lack…
Seminario web: Por qué es importante la donación de tejido cerebral
La pérdida de un ser querido que padece una epilepsia rara es inimaginable. Todos desearíamos que pudiéramos hacer más para ayudar a poner fin al sufrimiento que conlleva...
Planificación de medidas para las convulsiones de verano: lo que necesita saber y hacer para estar preparado
"Summer Seizure Action Planning - What you need to know and do to be prepared" with pediatric neurologist, Dr. Inna Hughes With Summer comes changes in routine, new caregivers, and…
Planificación SAP de verano: lo que necesita saber y hacer para estar preparado
"Planificación SAP de verano: lo que necesita saber y hacer para estar preparado" con Dr. Rebecca Garcia-Sosa En Español! Con el verano llegan cambios en la rutina, nuevos cuidadores y…
¿Qué estamos aprendiendo sobre las vacunas COVID-19 y las infecciones en personas con epilepsias raras?
Are you curious about the safety of COVID-19 vaccines for those under 5 with rare epilepsies? Are you unsure about whether to get your child with a rare epilepsy vaccinated…
Regreso a la escuela SAP
Back to school time means it's time to update your child's seizure action plan (SAP)! Make sure that those who care for your child know how to handle seizure emergencies…
Salud e higiene bucal para quienes no comen por la boca
Does your loved one with a DEE/rare epilepsy struggle with dental issues? Swollen gumsExcessive oral secretionsTooth grinding Join us to hear from Dental Hygienist who specializes in working with medically…
Keto and the DEEs
Do you have questions about the keto diet? Come to find out how the ketogenic diet works with the DEEs from Ketogenic Diet Program Director and Pediatric Epileptologist Dr. Chalongchai…
Epilepsy Surgery and Rare Genetic Disorders
Come hear about when and why you should consider epilepsy surgery for your child with a DEE. Our guests will be: Dr. Ahmad Marashly, Medical Director, Pediatric Epilepsy Surgery Program,…
