I've been looking at various sites and there has to be at least 150,000 if not more of us that use one site or another. I've started to send emails to my Senators, Congressmen and women urging them to help increase awareness of our disorder. As November is our month I've also requested that the help with the recognition of this by wearing purple and helping us fight the fight. There is strength in numbers - try and contact these folks who represent us and don't be afraid to keep bothering them. If I don't get a reply I'll just re-send the original until I do. Be polite but let them know you do have expectations.
Best of thoughts to all,