Eventos
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…
Seminario web CURE Epilepsy: Hablando sobre SUDEP: Armando a la comunidad de epilepsia rara con las últimas investigaciones
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 of seizure control and seizure severity are the most common concerns for increased risk of SUDEP, there is also a concern that certain genetic mutations…
Seminario web: Por qué es importante la donación de tejido cerebral
La pérdida de cualquier ser querido que padezca 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 y los DEE
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…
Cirugía de epilepsia y trastornos genéticos raros
Venga y escuche cuándo y por qué debería considerar la cirugía de epilepsia para su hijo con DEE. Nuestros invitados serán: Dr. Ahmad Marashly, Director Médico, Programa de Cirugía de Epilepsia Pediátrica,…
Problemas gastrointestinales pediátricos en las DEE
Come hear about GI issues such as reflux, feeding tubes, constipation, and more from pediatric GI doctor and KdVS dad Russ Zwiener. The discussion will be led by Kaci Fisher, a…
