In 2010, our Dravet Syndrome Foundation founding members established our first online support group. What started with roughly 100 members in the first few months has now grown to over 3,000 members as of January 2022!
In 2017, we launched the DSF Family Network (DSFFN). We created 5 additional Facebook groups, based on geographic regions, to help families connect locally. In addition, we established a Facebook group to help Caregivers of Adults better connect to share experiences and resources.
To assist with our growing community, the DSFFN includes the Parent Ambassador Program. These volunteers are active in our Facebook Support Groups as they facilitate networking, support, and awareness to newly diagnosed and veteran members seeking information about particular topics. They assist with social media engagement, participate in virtual and in-person fundraising, and attend virtual and in-person events. Our Parent Ambassadors are compassionate, resourceful, and understand what life is like with Dravet!
DSF is looking to grow our Parent Ambassador Program! If you are looking to give back to our community, we encourage you to learn more and apply! Applications are due by February 20.
Questions? Contact Erin, our DSF Family Network Support Group Liaison: [email protected]