Psiloscribe Posted April 15, 2013 Share Posted April 15, 2013 A big thank you to everyone that helped make this trip such a success. i will be posting a full report here and on the website as soon as I can get it all written up. There is a lot to report on. Just the first of many thank-you's to Cindy for doing so much prep work and amazing work while in DC. Someone mentioned it was a little like herding cats and I agree. ;-) Thank you Cindy for not only all the work but also for keeping the motivation and determination levels high throughout the event. Clusterbusters pulled together a strong contingent of advocates that comprised a full 25% of the delegates in attendance. Once again they were all inspirational to the group as a whole and their determination made evident to all the representatives they met along the way. Thanks to our group, and John Bebee in particular, we were able to make contact with some of the most influential people in Washington. The very ones we need to hear our voices and are able to take action on our behalf. Our 'asks" involved the National institutes of health, the Social security administration and the V.A. All of the other meetings our advocates held with their reps made our needs known and will help bring the changes we all need. Thanks to everyone that attended, everyone that helped fund this mission and everyone that has supported us along the way. Bob Quote Link to comment Share on other sites More sharing options...
mrweekend Posted April 16, 2013 Share Posted April 16, 2013 I really believe we made some progress this year! Please contact your Congressmen and ask them to support our asks and send the language we presented, as they make their decisions this week. Thanks, Lee Quote Link to comment Share on other sites More sharing options...
1961mom Posted April 17, 2013 Share Posted April 17, 2013 Thank you so much Bob. It's just that cheerleader gene in me, lol. (I'd like to be able to remove the CH from the Ch-eerleader) I could start a new trend.....eerleading!!! I promise to share more here soon, but in the mean time wanted to post our "mention" in the San Francisco Chronicle, along with quotes by Goadsby. Huge! http://www.sfchronicle.com/health/article/Cluster-headaches-a-mystery-oxygen-helps-4439954.php?t=11992d8b3a47b02379 Quote Link to comment Share on other sites More sharing options...
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