Working to advance the pace of science to more rapidly advance better care and treatments for those with rare pediatric epilepsies and their families.
We work to accelerate the pace of science in order to bring hope and improved outcomes for all those living with rare pediatric epilepsies and their families.
Motivated by and with families at the center of all we do, we work collaboratively with researchers, clinicians, pharmaceutical companies and beyond to improve treatments for and the quality of life of those living with rare epilepsies and their families.
Our work has focused on high-impact collaborations to address the critical gaps in research and get us closer to targeted treatments. April 2022 marks 8 years of grant making to early career scientists - many of whom have started their own labs focusing on SCN8A. We hosted the inaugural scientific gathering of SCN8A clinicians, researchers and families in 2015 and have continued to host scientific meetings leading to critical publications and invaluable collaborations. We started a Clinicians Network to develop the first standard of care for SCN8A as well as a Research Consortium to increase collaboration and reduce duplication.
We also play leadership roles in the wider rare epilepsy community. We founded DEE-P Connections, with 45 advocacy partners, to bring critical resources to caregivers of children with the most profound epilepsies. In its first 2.5 years, DEE-P hosted 60 webinars, bringing epilepsy experts directly to families, sharing critical information and answering caregiver questions (all are recorded and housed in our Resource Center).
Write a review