Webinar: Low-Tech Solutions for Children with Complex Communication Needs
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…
Webinar: High-tech solutions for children with complex communication needs
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…
Growth Attenuation Therapy – Everything you want and need to know
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,…
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…
Webinar: Why Brain Tissue Donation Matters
The loss of any loved one with a rare epilepsy is unimaginable. We all wish there were more we could do to help end the suffering that comes with a…
Summer Seizure Action Planning – What you need to know and do to be prepared
"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…
What are we learning about COVID-19 vaccines and infections in those with rare epilepsies?
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…
Back To School 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…
Oral Health and Hygiene for Those Who Do Not Eat by Mouth
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,…