For families living with Dravet syndrome, 2025 has been a year filled with moments of hope, progress, and connection. Our community has come together to celebrate not only scientific breakthroughs but also the bonds that make this difficult medical journey a little less daunting. Breakthroughs on the Horizon Imagine a child living with daily seizures, […]
A Year of Gratitude and Progress for the Dravet Community Read More »
What a dream come true! Sofie’s Journey awarded our family a scholarship to attend Epilepsy Awareness Day at Disneyland (EADDL) this year. We have talked about going for years now, but the thought of taking Zachary, our child with Dravet syndrome, to Disneyland gave me immediate anxiety. But after the last 2 years of him
Gemma Carvill is an Associate Professor in the Department of Neurology at Northwestern University. Her lab uses genomic technologies to define the molecular basis of epilepsy, including coding and non-coding variants. She integrates computational modeling with high-throughput assays of variant effect to understand which genetic variants cause epilepsy. Her work also leverages transcriptomics and epigenomics
Gemma Carvill, PhD Read More »
When your child is first diagnosed with Dravet syndrome, everything changes, instantly and profoundly. Life as you knew it shifts. Suddenly, your days are filled with unfamiliar medical jargon, emergency room visits, constant worry, and a deep, aching sense that no one truly understands what you’re going through. As a dad, that experience can be
Introducing a New Support Space for Dads Navigating Dravet Syndrome Read More »
From the Epilepsy Foundation on November 13, 2025: The longest partial government shutdown in history has ended after 43 days. On Monday, the Senate advanced the legislative package by a vote of 60-40 and then yesterday, the House of Representatives approved it by a vote of 222-209 and President Trump signed the bill into law late last night. Below,
Impact of a Federal Government Shutdown on the Epilepsy Community Read More »
When a parent first hears the words “Dravet syndrome,” their world shifts. Suddenly, they’re navigating a life marked by uncertainty – one filled with overwhelming questions, fears, and very few clear answers. Out of that uncertainty, something remarkable has grown: a community that refuses to wait on the sidelines. Dravet Syndrome Foundation, or DSF, was
Why the Work of DSF Matters Read More »
Over the past three blog posts (Week 1, Week 2, and Week 3), we’ve explored how the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder can support you in preparing for your loved one’s transition to adulthood and in planning for their long-term care needs. In our final week, I’m excited to introduce a new
Sibling Companion Guide for the C.A.R.E. Binder Read More »
For individuals living with Lennox-Gastaut syndrome (LGS), Dravet syndrome, or tuberous sclerosis complex (TSC)—and the caregivers who support them—seizures are only part of the challenge. Behavioral challenges can also be disruptive—and far less supported. That’s why we’re launching The Behavioral Impact Project: Amplifying Caregiver Voices– a large-scale survey designed to capture real-world caregiver experiences with
Help Us Understand the Impact of Behavioral Challenges in Rare Seizure Disorders Read More »
In our last two blog posts (Week 1 and Week 2), we’ve explored how the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder can support you in preparing for your loved one’s transition to adulthood and planning for their long-term care. This week, we’re focusing on some key information you’ll want to start documenting when
Planning for Long Term Care and Medical Transition Read More »
In last week’s blog post, we introduced the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder and how it can help with transition planning. In this week’s blog, we’re diving into how to get started with the C.A.R.E. Binder, along with the next steps to help you make the most of it. When beginning the
Taking a Deeper Dive into Transition Planning Read More »
