June is Dravet Syndrome Awareness Month—a time to learn about a rare and severe form of epilepsy that begins in early childhood. At Advocacy Links, we provide information for resources for families navigating complex medical and developmental challenges like Dravet Syndrome. This month, we’re raising awareness to help others understand what this condition is and how we can all show support.
What is Dravet Syndrome?
Dravet Syndrome is a rare genetic epilepsy that typically begins in the first year of life. Children with this condition experience prolonged seizures that are often triggered by fever, heat, or stress. Over time, it can affect development, coordination, speech, and behavior. Dravet Syndrome is lifelong, and managing it requires a team of medical professionals, therapies, and strong support networks.
Why Awareness is Important
Because it is rare, Dravet Syndrome is often misunderstood or misdiagnosed. Families may spend years searching for answers. Raising awareness helps improve early diagnosis, access to treatment, and understanding in schools, communities, and support systems. It also helps families feel less isolated—and more empowered.
The Impact on Families
Living with Dravet Syndrome can be overwhelming. Daily life often involves managing medications, monitoring seizures, and making safety adjustments at home, school, and in the community. It affects the entire family—emotionally, physically, and financially. That’s why support is so important.
How You Can Make a Difference
You can help by learning more about Dravet Syndrome and showing support for families affected by it. Share facts, attend awareness events, or wear purple in June to show you care. Every act of awareness helps families feel seen, understood, and supported.
Hope Through Understanding
There may be no cure for Dravet Syndrome yet, but there is hope. With early intervention, the right care, and strong advocacy, children and families can lead meaningful lives. This June, let’s come together to raise awareness, show compassion, and create a world where every child—no matter their diagnosis—is valued and supported.