New Sibling & Parent Resources One of the greatest concerns of parents and caregivers in our community is the impact on siblings who have a brother or sister with Dravet syndrome. Their needs are frequently neglected because so much of the parents’ emotional energy and time is focused on the medical care of [...]
Virtual Meet-Ups DSF Virtual Meet-Ups are a chance for meeting up face-to-face with one another to chat about what is on our minds and meet new people. The meet-ups are interactive discussions rather than a presentation. They are a great way to spend some time with other Dravet parents from the safety of your own [...]
Patient Assistance Grant Program Open DSF has long recognized the financial burden our families face and has offered our Patient Assistance Grant (PAG) program since we were first founded in 2009. While it cannot fulfill all of the financial needs within our community, we hope that it offers a positive avenue to obtain [...]
Virtual Meet-Ups We held our first Virtual Meet-Ups these past 2 weeks. We thank you for your feedback and we heard you LOUD & CLEAR! The community LOVED meeting up face-to-face with one another to chat about what was on our minds, meet new people and even say hello to some of the [...]
Free Webinar: Coronavirus (COVID-19) Resources for DEE Families DEE-P Connections is hosting a special webinar, Protecting Medically Complex and/or Immune-Suppressed Children with Epilepsy from COVID-19 on March 19 from 8-9pm ET. This webinar will be moderated by Heidi Grabenstatter, PhD - Science Director of the International Foundation for CDKL5 Research, and will feature three [...]
Free Webinar: IEPs for Children Severely Affected by DEEs DEE-P Connections is hosting an introductory webinar about Individualized Education Plans (IEPs) on Wednesday, February 26th at 2pm. This webinar, led by Monika Jones, JD CEO of The Brain Recovery Project, is aimed at helping families of children severely affected by DEEs navigate the [...]
DSF is Hiring a Research Coordinator We’re Hiring a Research Coordinator! Are you a scientist who absolutely loves the work that Dravet Syndrome Foundation (DSF) does, but is looking for a change from the lab environment? We have just the opportunity for you! We’re looking for a community-oriented scientist to direct DSF’s research efforts. DSF [...]
Video Education Session February 13, 2020 Dravet Syndrome Foundation is pleased to announce a new, live video education session! On Thursday, February 13, 2020 at 2pm ET, head to RareDiseaseLive to hear a dialogue between medical specialists and families facing Dravet syndrome. Panelists include: Kelly G. Knupp, MD, MSCS Dagmar Amtmann, PhD Nicole [...]
1oth Annual Research Roundtable The Dravet Syndrome Foundation was honored to host our 10th annual Research Roundtable on December 5, 2019 in conjunction with the American Epilepsy Society’s annual meeting in Baltimore, MD. The Roundtable began in 2010 with 10-15 scientists and parents brainstorming how to move Dravet syndrome research forward. Ten years [...]
Birthday Buddies Club Join the DSF Birthday Buddies Club and your child will receive a birthday card and small gift from DSF's mascot, Aurora! Patients of any age may participate, however, at this time, the DSF Birthday Buddies club is only available for Dravet syndrome patients in the United States and the parent [...]
