Having a loved one diagnosed with Dravet syndrome is scary and often overwhelming, even with guidance from the best medical professionals. The DSF Family Network was established with the hope that it would provide families with the support and reassurance that only another patient family can offer. The programs of our network include our Day of Dravet regional workshops each fall (registration is now open!) and our Parent Ambassador program.

In 2017 we assembled a group of Parent Ambassadors in five regions across the United States. Each Parent Ambassador has their own personal experience of caring for a loved one with Dravet syndrome. They are not medical professionals, nor are they trying to be. They are here to offer hope and guidance to those affected by Dravet syndrome by sharing their stories and experiences to reassure patient families that they are not alone. They have the ability to connect families with one another and to guide them regarding local services and resources. As part of their role within DSF, they also help to plan and execute the regional Day of Dravet workshops, fundraise, and support the implementation of all of our programs. They are truly an irreplaceable part of our community. 

How do our Parent Ambassadors assist our community?

  • They are available to communicate with newly diagnosed families. 
  • They are an ongoing resource for families in need of information or regarding new challenges they are facing.
  • They help to create unity within our community, on a regional level.
  • They are a conduit to help families to help them get involved with DSF and stay connected.
  • They help families better understand the programs and materials that DSF offers and the work we do.

Since 2018, our Family and Caregiver Engagement Director, Wendy Fry, has overseen our Parent Ambassador Program, including their training and support. Parent Ambassadors participate in an annual training session to assure they are up-to-date on the programs and services that DSF offers patient families. Recently, our Parent Ambassadors had the opportunity to participate in a professional Peer-to-Peer Support Training to give them the tools they need to better assist families. The Parent Ambassador Program continues to grow and provides vital support to our community. You can learn more about the DSF Family Network and the Parent Ambassadors who serve your region on our website. And, you have the opportunity to meet your regional ambassadors at this year’s Day of Dravet workshop near you!