DSF will be hosting monthly online sessions to offer caregivers the opportunity to connect and engage with peers, to support one another, as well as to ask questions of DSF and its staff. We know that exposure to stories, insights, and information sharing is particularly helpful when you are caring for someone with Dravet syndrome. …
A diagnosis brought us together. Our hearts keep us together. Read More »
In a recent Decoding Dravet post, we took a moment to highlight fathers and father-figures in our community. During the Day of Dravet workshops, DSF brought together a small group of Dravet Dads to have a heartfelt conversation about their unique experiences. The feedback from that session was so overwhelmingly positive that DSF proposed an …
It is no secret that mothers and female caregivers make up the majority of our Dravet Syndrome Foundation Parent and Caregiver Support Group. Our community is not unique in this way. We know that fathers and father-figures are a part of our community and DSF strives to better support them. Earlier this year, we welcomed …
Being the parent of a child with Dravet syndrome can be lonely and isolating. It’s easy to feel like no one else “gets it”, that no one else understands our day to day experiences or the challenges we face… No one else, except another Dravet family. This past July, in Edmonds, Washington, a small beach …
Host a Family Gathering with a Caregiver Connect Grant Read More »
In April 2016, just 6 short years ago, we received the devastating news that our (then) 2 year old son had an SCN1A gene mutation. Later diagnosed with Dravet syndrome, our lives were forever changed. We’ve gone through every emotion and, even now, continue to grieve. With our grief, we also took action and began …
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