2020 Day of Dravet Registration is Open Join the DSF Family Network for our 4th Day of Dravet event on Saturday, October 17th. DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a [...]
DSF Disaster Relief Fund FAMILIES AFFECTED BY NATURAL DISASTERS 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. In addition to this program, we have also established the DSF Disaster Relief and Recovery Fund for patients with [...]
2019-2020 Progress Report In 2018, Dravet Syndrome Foundation (DSF) developed a 5-year strategic plan to articulate the long‐range direction and priorities for our organization. The content for our strategic plan was derived by examining the Dravet syndrome landscape. We listened to a broad range of input from key stakeholders within our community regarding [...]
Back to School Anxiety in the Dravet Community Join DSF for a session on Back to School Anxiety in the Dravet Community While the pandemic has had a devastating effect for all students, most special ed students have had a particularly difficult time adapting to distance learning. In response to this, DSF is [...]
New Sibling & Parent Resources Many members of our community including parents and siblings (ages 9 and up) participated in a research study called the Sibling Voices Survey. Findings from the study were presented at the 2018 DSF Conference in Aurora, CO. An infographic of the findings can be found here. And now, thanks to [...]
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 [...]
