When you are going through something hard it’s always good to know that there are people “in the same boat” as you are. And while I appreciate the sentiment I’m not sure that it is the best way to talk about the community that we have as families living with Dravet syndrome. I think that really, we are all on the same sea. That really we are an armada of boats working together as a Navy (if you will) in battle, moving ever forward toward a cure for Dravet syndrome.
Within our armada our ships are all different as each of our stories are different. Some ships are brand new that have just been launched into the sea, others are war worn after 10, 15, 30 years of battles fought. Plus we have some specialized ships that help further our cause. Some of these ships are part of the Family Network Ambassador and Brand Ambassador programs.
The Family Network and Brand Ambassadors are made up of parents and guardians of children with Dravet syndrome. They are people who see the mission of DSF and want to do more to connect with other families.
The Family Network Ambassadors are like the supply and relay ships. They help with communication between families and the foundation. They help with resources and make connections to newly diagnosed families. They assist DSF by supporting and organizing fundraising. And, often, these ambassadors are the first people that a newly diagnosed family might meet.
Brand Ambassadors are the ships that raise the colors on their mast to alert on lookers who we are. They act like sign posts directing observers to our foundation. They are the information spreaders to those outside of our armada. They work within social media with the key goal of increasing awareness.
Both programs are vital in their necessity and we as a foundation need these programs because we can’t do it alone. We need volunteers like you to say, “I know where you are; come sail next to me for a while.”
The “in the same boat” analogy really removes the unique individual experience of this journey we are on. Each boat is a little different. And we need more messenger ships, and more ships to raise the colors high. So join us. Join us in taking a real and tangible role in furthering the mission of DSF so that one day we can conquer this disease. You can click here to apply to be an ambassador. If you have any other questions about the programs you can email austin@dravetfoundation.org or erin@dravetfoundation.org
