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 »
With the constant care demands of your loved one with Dravet syndrome, it’s understandable that transition planning might not even be on your radar. Transitioning to adulthood is a complex, often overwhelming, and deeply emotional process. The journey can look very different from one household to the next, as each young adult’s abilities, needs, and future
Getting Started with Transition Planning Read More »
In 2025, the National Institute of Neurological Disorders and Stroke (NINDS) marks its 75th anniversary, celebrating a legacy that began in 1950. This milestone underscores NINDS’s mission to advance understanding of the brain and nervous system and reduce the burden of neurological disease through research, training, collaboration, and outreach. Since its founding, NINDS has driven
NINDS 75th Anniversary Read More »
Lenny Lopez Leonardo (Lenny) was born in San Juan, Puerto Rico. He moved to Massachusetts as a young boy where he currently resides with his wife Amy and their two adopted children Becca and Isaias. At 16 months old Isaias was diagnosed with Dravet Syndrome after suffering from several different seizure types. Lenny has helped
Pablo Pluma Pablo was born in Greeley, Colorado, and raised in the nearby small town of Kersey. For the past 27 years, he has worked in manufacturing as a supervisor at Walker Mowers.He met his wife, Perla, when they were just 12 years old, and this July, they’ll celebrate 20 years of marriage. Together, they
Sirena Denbow Originally hailing from the beaches of Southern California, Sirena was transplanted to Washington State in 1986. After high school she earned her AA through Green River Community College and her bachelor’s degree from The Evergreen State College. She is currently finishing her final year of Washington State’s APR 6 law clerk program, with
