Since 2009, DSF Steps Toward a Cure walks have gathered the Dravet community to unify our voices, increase awareness about Dravet syndrome and generate support for those who suffer from its potentially devastating challenges. Funds raised at these events have helped DSF to fund over $4.6M in research and over $160K in Patient Assistance Grants [...]
I often reflect on the amount of time spent traveling to and from the numerous doctor and therapy appointments with my son over the years. Negotiating my work schedule, coordinating school and therapy schedules, packing medical equipment and medicines, loading my son and his wheelchair into the car, making the sometimes-long drives to the clinic, [...]
Patient-Centered Outcomes Research (PCOR) is research that provides patients and their clinicians with evidence-based information in order to help them make more informed healthcare decisions. It also gives patients the opportunity to express what is most important to them and answer questions about the potential benefits and harms of different care options, given a patient’s [...]
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 [...]
Meet our new Research Coordinator, Veronica Hood, PhD! Welcome to Our New Staff Member! We are so excited to welcome Veronica Hood, PhD, to DSF as our new Research Coordinator. Veronica has an MS in Biology from East Tennessee State University and a PhD in Cell, Stem Cell, and Developmental Biology from the University [...]
Stoke Therapeutics Launches MONARCH Study The MONARCH Study, conducted by Stoke Therapeutics, is currently enrolling for a Phase1/2a trial of STK-001. This new therapeutic medicine acts to specifically increase the number of healthy sodium channels (Nav1.1) that are impacted by mutations in SCN1A gene, the most common cause of Dravet syndrome. The study [...]
FINTEPLA® Receives FDS Approval for Treatment in Dravet Syndrome On June 25,2020, the FDA approved FINTEPLA® (fenfluramine) oral solution for the treatment of seizures in Dravet syndrome for patients 2 years and older. As part of the approval, the FDA required a black box warning on the medication. Additionally, the FDA requires the [...]
Last Call to Party in Your PJs for Dravet! It's not too late! Register by July 18th to receive your party pack in time! Mark your calendars and join DSF on July 25th to Party in your PJs for Dravet! Since we are unable to do in-person events at this time, in place of our [...]
While many of the families in the Dravet syndrome community obtain one or more of their child’s medications (such as Diacomit or Epidiolex) by mail from a specialty pharmacy, other families are not familiar with specialty pharmacies and the services they offer. A specialty pharmacy supplies medications for rare, complex, and/or chronic conditions, and offers [...]
Today's Guest Blog Post comes from Joy Segovia. Joy is a freelance science and copy writer based in Oregon. She studied neuroscience and anthropology at Bowdoin College and spent over ten years working in behavioral health and educational settings prior to ditching the commute to homeschool her children and care for her youngest daughter, Adelina, [...]
