EDC NATIONAL Lobby Day has been scheduled for April in Washington DC. I hope all US parents will consider joining in.
You know, I hear all the time from parents in that first few months after the diagnosis. They're shocked -- we all are -- not only by the illness but the "Why on earth hasn't someone..." and the list is long of all the things we need. Better research, better research dissemination, better policy, better public awareness. Well, someone has to DO it for it to get done, folks: if not for us then for the next cohort of families getting smacked in the face.
Participating in EDC's Lobby Day is not just being a face in a crowd. Each person there truly TRULY has an impact. Legislative staff pay attention not only to what we say when we tell our stories -- and that is all you need to do -- but they also realize that anyone who makes it to their office represents many many more.
EDC knows what it is doing and how much work and relationship-building and deep knowledge of the legislative process it takes to make change. You can't charge in with just passion or a good idea. It takes years of work and selfless dedication. EDC does this, and has a track record of success, without self-promotion or an enormous budget. They do this work not to raise funds for their organization or to promote themselves: they are a coalition of organizations, families, researchers, and clinicians who pitch in to help. We all play a role and we are all missed if we're not there.
Don't worry: you don't need to understand the legislative process or how to find your way around the Capital. You get training, you move around with a group, and all you need is YOUR UNIQUE STORY. That story matters. Go tell it!