Recently, patient advocacy groups started using the name Gould syndrome to describe clinical features of COL4A1 and COL4A2 mutations. Among the chief concerns for caregivers of children with Gould syndrome are the challenges faced because of epilepsy, including severe manifestations such as infantile spasms.
Pediatric Epilepsy
Researchers at the Kennedy Krieger Institute, with colleagues from Johns Hopkins University, have identified an important molecular mechanism that offers significant promise for understanding and developing novel treatment for drug-resistant seizures in newborns.
In this month's update, you'll find information on CURE Epilepsy grant applications, an upcoming seminar, PAME, and additional grant funding opportunities.
A new study found patterns could be identified in patients who wear a special wristwatch monitoring device for six to 12 months, allowing about 30 minutes of warning before a seizure occurred.
Pediatric Epilepsy
The analysis indicated that pathology and surgical location play critical roles in the outcome of epilepsy in children under the age of three.
November is Epilepsy Awareness Month, a month the community comes together to build awareness. This month CURE Epilepsy will be hosting webinars, sharing important content about advancements in epilepsy research, and more.
Currently, high-quality interventional studies are needed to improve knowledge, attitudes, and practices of physiotherapists with regard to epilepsy and patients with epilepsy
HMGB1 distinguishes with high specificity and selectivity drug-resistant versus drug-responsive patients. This protein therefore has potential clinical utility to act as a biomarker for predicting response to therapy, which should be addressed in prospective clinical studies.
A survey to understand what matters most to families and patients with Dravet syndrome showed that items related to daily life ranked higher than items related to seizures.
