Decoding Dravet Blog

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 […]

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

With the recent passage of HR 1 by Congress, rare disease communities – including Dravet syndrome – are seeking clarity on how the new legislation may impact their loved ones and families, particularly in areas such as access to care, insurance coverage, and treatment affordability. One of the programs most impacted from these major policy

Being a caregiver for someone with Dravet syndrome can feel overwhelming. It’s easy to feel like no one else understands our day to day experiences or the challenges we face but connecting with others who get it, and live that shared experience can make a HUGE difference. This is where a Caregiver Connect Grant can

Our Patient Assistance Grant program (also known as PAG) has been a part of our advocacy efforts at DSF since 2009. We recognize how difficult it can be for families to obtain the necessary equipment to make life more manageable for their child or adult living with Dravet syndrome. Many of these items are not

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

Scientific advances in gene and cell therapy are moving fast. CRISPR-based therapies are being developed in record time to help children with life-threatening conditions. At the same time, new delivery approaches are making it easier to target the brain for neurological diseases. As the FDA and other regulators shift leadership and strategy, the entire landscape

A recent medical breakthrough resulted in the successful treatment of a child with a rare genetic disorder with a personalized CRISPR gene editing therapy developed at lightning speed thanks to the work of researchers at Children’s Hospital of Philadelphia (CHOP). It’s the kind of story that brings hope to rare disease communities watching from the

I never imagined I’d become the parent of a child with a rare disease. I never pictured a life built around emergency medications, seizures, feeding tubes, IEP meetings and hospital rooms instead of family fishing trips, soccer practices, and play dates. But when our son Mason was diagnosed with Dravet syndrome at just seven months

As Dravet Remembrance Day approaches on June 15th, we’d like to share a heartfelt blog post written by Blake Fish about her son, Bentley. Bentley was the kind of child who could change the entire atmosphere of a room just by walking into it. He had a spark about him; an undeniable charm, a brightness