1961mom Posted March 24, 2013 Share Posted March 24, 2013 What would you say to your representatives? I'd like to know!! If it's helpful, I've been posting updates about the Washington DC trip in this thread: ClusterBusters Forum › General Category › Advocacy, Events and Conferences › Join Us In Washington DC for HOH 2013 http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1360136241 There are links to the fundraiser, the Facebook Event page and the team map in that thread along with the "serious guidelines", but I'm hoping to hear from everyone...Rants included!!!! I think it would be super helpful!!! Share please Mom (Cindy) Quote Link to comment Share on other sites More sharing options...
blueballs Posted March 25, 2013 Share Posted March 25, 2013 Can I get a small bailout? Maybe some foreign aid?... j/k Quote Link to comment Share on other sites More sharing options...
1961mom Posted March 26, 2013 Author Share Posted March 26, 2013 ;D Quote Link to comment Share on other sites More sharing options...
blueballs Posted March 26, 2013 Share Posted March 26, 2013 Actually I have been running some things around the noggin. Maybe a short line on the lack of understanding we face on several levels, the level of pain, the condition , research and treatment , as well as the level of disability it causes, despite being just a headache. I think we all can agree that more infomation and mutual understanding is beneficial for everyone.... Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 5, 2013 Share Posted April 5, 2013 It seems like President Obama's recently-proposed BRAIN Initiative (Brain Research through Advancing Innovative Neurotechnologies)) would be very much in the interest of understanding more about CH mechanisms. Of course there is a danger: http://www.colbertnation.com/the-colbert-report-videos/425102/april-04-2013/obama-s-brain-initiative Quote Link to comment Share on other sites More sharing options...
Psiloscribe Posted April 9, 2013 Share Posted April 9, 2013 Hello From DC, Just letting everyone here know that you have an incredible group of people here representing you all. We've spent the day gettig ready to make our voices heard. This is one motivated group.... And dont tell him I said so but......John Bebee is the star here. ;-) I'm proud of this group and the turnout from the cluster community. Give you all an update soon!!! Bob Quote Link to comment Share on other sites More sharing options...
b.g. Posted April 9, 2013 Share Posted April 9, 2013 KICK SOME ASS FOLKS! Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted April 10, 2013 Share Posted April 10, 2013 And dont tell him I said so but......John Bebee is the star here. ;-) Our man on the hill....tie of pink and balls of blue..... Quote Link to comment Share on other sites More sharing options...
blueballs Posted April 10, 2013 Share Posted April 10, 2013 Bwwwwwhhhwwwwwhhaaaaaaaa......rotflmmfao...... ;D ;D Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 10, 2013 Share Posted April 10, 2013 THANK YOU, THANK YOU, THANK YOU, one and all. Or, as Jeebs would put it: [/img] Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted April 10, 2013 Share Posted April 10, 2013 Beebee be rockin' the hill! Beebee be rockin' the hill! [smiley=thumbup.gif] [smiley=thumbup.gif] Quote Link to comment Share on other sites More sharing options...
blueballs Posted April 11, 2013 Share Posted April 11, 2013 There were many stars. So many so bright. Now comes the time for all to shine...call your representatives, indicate your support for the AHDA. Blue book inclusion of headache disorders, NIH funding for headache research, PTSD and migraine treatment and research for our active duty troops abd veterans.....please. Quote Link to comment Share on other sites More sharing options...
1961mom Posted April 13, 2013 Author Share Posted April 13, 2013 It seems like President Obama's recently-proposed BRAIN Initiative (Brain Research through Advancing Innovative Neurotechnologies)) would be very much in the interest of understanding more about CH mechanisms. My thoughts exactly! A sociologist who was present during the training session led a sort of round table discussion on the subject. She believed admission that "headaches" are in any way connected to the brain would be further stigmatizing! Really?? How much more stigmatized can this patient group be?!! Go work for Colbert! Cause to me, that's pure comedy! We say this to that! Here are my take away thoughts on last week's Advocacy event at the Capitol. Positively, one of the purest measurable advancements our patient group has known in years. It was possible because of a whole host of synergistic ideas, actions and commitment from initiation to follow through. I have a huge respect for neurology, neurologists and neurosciences. What these guys see on a daily basis in their practices is not only our patient group, but every other primary headache patient too. They firmly adhere to this; Headache pain is always a symptom. Being able to identify the cause of the symptom (i.e., tumors, cysts, aneurisms or clots) or not does not change it from simply being a symptom. The steady stream of patients they see are disabled by pain, overlooked by science, pharma and marginalized by our whole society. I learned how frustrating it's been for them as care givers to wait for science to "catch up" to the exploration of the brain (which includes seeing headache pain as a symptom). Doubly frustrating is the continued resistance from science to see the "headache patient group" as a group who belongs in this exploding area of research. We simply cannot be caught up in another "catch 22". http://www.youtube.com/watch?v=G41SJUIawVo We must be crazy too! Forcing every arena whose played a role in shaping and reinforcing the negative experiences of the primary headache patient into evolving away from what's comfortable & the accepted known norms is not going to be a cinch. LOL. To shift the thinking and connect the dots is just one of our many tasks. And it's upsetting. Not just to us, but to these organizations too. Change is difficult. Painstakingly difficult. It's as though it's easier to continue the fables regarding the headache patient and keep us neatly tucked "out of sight/out of mind" over embracing headache pain for what it is: a symptom of something yet unknown going on in the brain. And that's a scary thought but I think the "Aha moment" is about to materialize! And connecting headaches to the brain, wow, that's just a astronomical step for many of these "old thinkers" to embrace. But we were ready. We overcame each objective and took the opportunity to replace old thoughts with new. During the SSA, VA, NIH meeting the biggest obstacle seen by the SSA in adding our patient group to the Blue Book was the lack of science to be able to perform a test whose outcome said definitively YES this is a CH patient or NO this is not a CH patient. Within hours of that meeting this article was published..... http://news.yahoo.com/doctors-brain-scans-see-measure-pain-210707739.html This obviously isn't going to be in every GP's office or ER room next year, but hey, it's pretty much what the guy was asking for, in my mind. If we continue to make advances in becoming a cohesive patient group who stands to benefit from being a united voice, the old "catch 22" will not only be nonexistent but non sequitur. Cindy Quote Link to comment Share on other sites More sharing options...
shocked Posted May 3, 2013 Share Posted May 3, 2013 Stuck in the seventies – http://tinyurl.com/cnoajzl shocked Quote Link to comment Share on other sites More sharing options...
1961mom Posted May 5, 2013 Author Share Posted May 5, 2013 Exactly shocked. So now who's "The Man"? I hope the memories prevail, we have no one to blame now. http://www.wired.com/wiredscience/2013/05/doblin/ Cindy Quote Link to comment Share on other sites More sharing options...
shocked Posted August 27, 2013 Share Posted August 27, 2013 Researcher works to unlock mysteries of migraines Vermont professor says research is far unfunded, allowing condition's invisibility. As if migraine weren't bad enough (it can be disabling) or widespread enough (it afflicts nearly one in five Americans), it also comes with a stigma that often renders it invisible. That's a social stigma that somehow even extends to the medical research community, which largely has overlooked this neurological disease for years — to the public detriment. So goes the plaint of Robert Shapiro, professor of neurology at the University of Vermont, practicing neurologist and headache specialist. http://www.usatoday.com/story/news/nation/2013/05/16/researcher-unlocking-mysteries-migraines/2165363/ "I know a lot of members of Congress have migraine," he said. "You cannot be very public about it." Why? Admitting you have a disabling condition can be "a career-killer." Rep. Michele Bachmann's campaign last year for the Republican presidential nomination, whatever its other challenges, was not enhanced by her acknowledgment that she suffered from migraine. "I believe there will come a point, hopefully soon, when it will dawn on enough members of Congress where they will realize they can be a hero by pushing on an open door and saying, we have a problem that we can help fix." Migraine isn't the only neglected condition, he said. "Cluster headache is a good case in point," he said. "Cluster headache is widely regarded as the most severe pain a human can experience — that's not hyperbole. It has a population prevalence that's approximately the same as multiple sclerosis." shocked Quote Link to comment Share on other sites More sharing options...
1961mom Posted August 28, 2013 Author Share Posted August 28, 2013 Shocked! That's our doc!!!! Robert Shapiro is the doctor (and president of The Alliance) who was in the meeting with Bebee & I with the NIH and SSA. He was definitely doing a little jig as we left that meeting!!! Good eye Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.