Last week’s blog post was a brief overview about how the Family Network Ambassadors and the Brand Ambassadors function within our organization to help further the mission of DSF. But let’s dive deeper…
The mission of DSF is what drives us as a foundation and a community. We continually look for ways to deepen this mission which is
…to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.
Family Network Ambassador (FNA): …to provide support to affected individuals and families.
My son was diagnosed with Dravet nine years ago this month. We didn’t know what tomorrow would hold. We felt so alone. But I found another family living in my town that had a daughter with Dravet. I met with them and suddenly I was no longer alone. I had someone I could call in the ambulance. I had a friend I could text when I felt lost. This person plays a pivotal role in my story. I volunteered to become a Family Network Ambassador so that I could return the favor that was bestowed upon me as a newly diagnosed mom facing this very big thing.
An FNA is often the first person a newly diagnosed family will interact with. They receive training on how to be a peer support. They have the opportunity to connect with our community in real and deep ways. They participate in fundraisers, caregiver gatherings, our biennial conference, and our online support groups. They are the ones that are the first to say, “you are not alone.” These ambassadors come from each of the five regions and help to provide localized support for their respective communities.
Brand Ambassadors: …increase awareness…
Social media isn’t going away any time soon. For me, as a geriatric millennial, I was an early adopter to “The Facebook” and “myspace” about 20 years ago. Millions of jobs have been created because of social media. “Influencer” is a real occupation. The ones that are the most successful know how to work the algorithms within the platforms. They know there are different tiers of interaction to get your content spread. For example “share” gets more views, than a “like.” So when a post gets shared it shows up in more people’s feeds. That’s the basic reason things go viral.
A Brand Ambassador works within social media platforms to increase awareness of Dravet syndrome and of Dravet Syndrome Foundation (DSF). They share created content by DSF and produce their own. They employ techniques to utilize the algorithms to DSF’s advantage. They share their own story too as these volunteers are also parents and caregivers of Dravet patients.
Both of these positions are integral to the perpetuation of our mission. We need more volunteers to step up and say, “I can do that!” You can apply to be an ambassador here. If you have any other questions about the programs you can email austin@dravetfoundation.org or erin@dravetfoundation.org
