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Everything posted by 1961mom

  1. Jump in Here's the link to write to your representatives! We've provided template letters inside the link and hope you'll use them as examples to write your own personal letter. We learned the most promising way to ensure a response is handwritten, personal letters. However, with the sequestration and recent mail threats many representatives have posted notes on their webpages discouraging snail mail. That's okay too. Sending a personal note online mentioning the AHDA, our "asks" and your personal story of life with CH is still generating positive responses. ~Cindy http://myemail.constantcontact.com/Headache-on-the-Hill-Update---Action-Request.html?soid=1109061736000&aid=W-YyCt2ccfI&fb_action_ids=4740976129859&fb_action_types=og.likes&fb_source=aggregation&fb_aggregation_id=288381481237582
  2. 2103 Headache on the Hill-Our own “Super Tuesday” Momentum True momentum is a confluence of ideas, bodies of dedicated messengers willing to convey those ideas and an appropriate listening audience who are seated in a position to act on those ideas and then do so. The momentum of the 2013 “Headache on the Hill” event is exciting and ongoing! For the benefit of new message board members let me share a brief summary of how our involvement with The Alliance for Headache Disorders Advocacy began in 2011.  Who is The Alliance? The Alliance for Headache Disorders Advocacy is comprised of registered nonprofit organizations who are vitally concerned about the health of patients with headache disorders including migraine disease, cluster headaches, chronic daily headache, new daily persistent headache, tension-type headaches. All headache disorders. The AHDA is dedicated to advocacy efforts that can result in better treatment for all headache disorder patients. http://www.allianceforheadacheadvocacy.org/ '> http://www.allianceforheadacheadvocacy.org/ History of our involvement Clusterbusters Board of Directors and President Bob Wold recognized a unique opportunity for the cluster headache patient group to have their voices heard at the congressional level by joining The Alliance for their 5th annual “Headache on the Hill” event. The preliminary research was completed and the 2012 team came together in a few short months with a dozen Clusterheads taking part in our inaugural presence on The Hill. Remarkably, 75% of the 2012 Clusterbuster team returned this year! Can we call them incumbents now? Fundraising Vital to the efforts of the entire team is fundraising. It’s important to recognize the many levels of support that enabled our patient group to have such a prominent showing at the 2013 event. The “Headache on the Hill” online fundraiser sought donations to assist those volunteering to travel with us who, with assistance of travel scholarships, were able to participate. This aspect is crucial to our continued advocacy work. We thank all who donated generously to this fundraiser. During the fundraiser we learned that congress had responded positively to one of our 2012 requests and were able to post this encouraging note; “To anyone wondering if our congress will be listening let alone acting on our behalf, I offer you this message from Dr. Robert Shapiro, President of the Alliance for Headache Disorders Advocacy "Because of last year's HOH, research funds to study chronic migraine and post-traumatic headaches are now available through the Department of Defense" Not an easy task in this time of budget cuts. Everyone that joined us last year should be proud of this accomplishment. “ -Bob Wold And the dollars rolled in! Clusterbusters stats and board positions The 2013 Clusterbuster Advocacy team increased from 12 members to 19 members. We were nearly one-third of The Alliance total team members.  We hope the AHDA advocacy team continues to grow in total, but for certain in the Clusterbuster members. It's with humble appreciation to physicians, researchers and other headache advocacy groups that AHDA (Alliance for Headache Disorder Advocacy) elected Clusterbusters as the organization to represent cluster headache sufferers nationwide.  The following is Clusterbuster President Bob Wold’s remarks regarding our acceptance into the organization and his positions on the relative boards; “As a Board member of AHDA and Co-Chair of AHMA (American Headache & Migraine Association - sub organization of ACHE), it's my continued determination to educate the public, spur research, and pursue every possible avenue to find answers and obtain effective medications for our condition.” Washington D.C. As the returning Clusterbuster team members arrived in Washington D.C. on Sunday and early Monday morning, they didn’t hesitate to engage the new team members with stories of what to expect during the Monday afternoon training session and the Tuesday meetings at the Capitol. It’s not easy to take time away from work and family but this is an amazingly dedicated group. Inspired because they know they can make a difference for not only themselves but for hundreds of thousands of families that live with Cluster Headache. The Alliance provided detailed training to cover what’s known as our “asks” or “requests”. The continuity from year to year is held and is often referred to as an ongoing “conversation”. The professionalism and focus this group exhibits is astounding. The following is a brief outline of the our asks; 1. Recognize disabling headache disorders with a listing in the official Social Security Administration listing of Impairments (Blue Book) 2. Increase the funding from the NIH for research on disabling headache disorders 3. Renew and support funding for research of Chronic Migraines and Traumatic Brain Injuries within the Department of Defense Congressionally Directed Medical Research Program. This funding needs to be reallocated each year. More of the conversation In an email sent from The Alliance out-going president, Dr. Robert Shapiro the day after the event we learned this; “Yesterday was a huge success, thanks to you. It was a real team effort. The final tally for Hill meetings was 64 people from 28 states visited 129 offices. A great turn-out! Furthermore, these offices included many of the most influential and powerful Members of Congress with regard to NIH and Social Security – the agencies targeted by our asks. My personal experiences, and the early reports that I’ve heard from you, were overwhelmingly positive responses to our asks. This bodes very well, but of course is no guarantee for our success.” As of today, we know Dr. Shapiro was being cautious in his final remark. Now let me share the really, really good part…. Making History Our own John Bebee is the constituent responsible for the influential meeting Dr. Shapiro speaks of in his email! Together, John, Dr. Shapiro and I spent 50 minutes discussing the various aspects of our “asks” with these influential members of the SSA & NIH. What struck me was how quickly this meeting went from sharing our “asks” to getting down to the brass tacks of a real discussion. One of the perceived obstacles was the lack of the medical community’s ability to run a diagnostic test capable of positively identifying a primary headache patient. Dr. Shapiro quickly supplied several ways to overcome these obstacles. Upon the close of every meeting a customary exchange of business cards takes place. While exchanging business cards with Tom Klouda, US Senate Finance Committee, Social Security Detail, he said these words: “Your names will not go down in history; however, I assure you that the results of this meeting will affect the lives of millions.” Beyond Civics One truly unforgettable feature for all patients participating is the peer to peer relationship nurtured with the other advocates during the event. Every participating member is an advocate first. Because of the nature of the event, a meaningful dialogue between patient advocates and the many attending top neurologists, leaders of neurology associations such as AAN, NHF and AHS who are just as compassionate about learning from us as they are about pursuing the goals of The Alliance, opens up, is encouraged and sought out. Whether it’s walking together to share a 30 minute Metro (train) ride from the Radisson to the Capitol, posturing for the group photo on the Capitol steps or grabbing a quick cup of coffee between meetings in the House and Senate buildings, it seemed we were always engaging in a free exchange of educational information. Inside the meetings, as greater details of our personal stories with clusters unfolded, not only did congressional members or staffers offer empathic compassion, so did leaders of the largest headache foundations in the US. Many of whom rarely see cluster patients in their own practices. Follow up-Maintain a Conversation Once the event is over and the advocates start departing, there’s a true sense of sadness. Feelings like you just don’t want this fervor to end (because you know what’s at stake) but the excitement returns as the days pass and you learn of the teams’ successes. A vital part of achieving the successes lies within nurturing these new relationships with the other advocates and the representatives we’ve met with. During the training session this was emphasized over and over again. Maintain a conversation. The cluster patient contingency has received remarkable follow up responses.  John Bebee’s Congressman Max Baucus of Montana writes the very first letter of support!  Next Dr. Shapiro (AHDA outgoing president), received a letter of support from Congressman Peter Welch of Vermont. Lee Markins Senator Kelly Ayotte has just written her letter of support too. In all, as of 5/23/13 the AHDA has received 3 letters of support. 1. Senator Max Baucus Letter of Support https://docs.google.com/document/d/1NMsGcBzIEnlHyIJDIqwjxMaTRKK5iuCKzrsQ3TzJ71o/edit?pli=1 2. Congressman Peter Welch NIH Funding Letter https://docs.google.com/document/d/1DlXLKv_DU9jRZpUkKKganad1DB3I-PHQeAEdKzhISNg/edit 3. Senator Kelly Ayotte Support Letter https://docs.google.com/document/d/1F-tD-Et1nC2nW4QtKG6vYMfQAr3hGi7Aos0Cm6-7P9E/edit We imagine many more conversations are going on, but wanted to share one example here: BJ and Becky had the following response from Laura Ringdahl Senior Legislative Assistant to Congressman Tom Reed, NY; Thank you so much for your email. I have actually been working on a draft letter that Tom had asked me to write regarding Federal research for Headache Disorders after you had come to the office last month. I will have that ready hopefully this week and will be sure to get you a copy. Thanks for following up, hope all is well in NY. Please don’t hesitate to reach back out in the meantime. Best, Laura Jump in! This isn’t one of those “You had to be there at the beginning to get into the swing of things” events. In fact, recalling The Alliance training session mantra of “It’s a conversation” is the most fitting way to close the Clusterbusters “Headache on the Hill” progress report. How fitting to end with a beginning. With united efforts with other primary headache patient groups, the cluster headache community not only increases our footprint and our voice, but has a real opportunity to also make further distinctions between the two diagnosis’s. We have all left the “Isolation Phase”, entered into the uplifting and supportive times of the “Connection Phase” and now have a real opportunity participating collectively in the “Action Phase”.  Sincere Thanks To the 19 cluster headache advocates, their families (both personal and CH community support families) who’ve started their conversations, sincere thanks goes out to you. We recognize you gave in multiple ways to be the voice representatives the US Congress heard in April. Your representation of the entire cluster headache patient group could not have been any better. Videos of cluster headache experiences were powerful visual aids, so we thank all the cluster headache patients who’ve had the courage to film, upload and share your videos on the web. These videos contributed immeasurable information to the viewers. Cindy Reynolds HOH Event Coordinator (with edits provided by Bob Wold) To view this report on our website: http://clusterbusters.com/?page_id=93
  3. Although this very sad chapter came pre1961Mom era, I think what nani points out is uber poignant. The clutches of the ignorant, mentally unstable and dangerous make me shudder & cringe when it comes to this patient group. It seems nearly impossible, in today's tech-savvy world that there are still hundreds of thousands in isolation. The thought can make me sick to my stomach when I think they could be in the clutches of similar whacko's.
  4. Wow, such an upsie downsie moment. Sure wish it would have worked for you heilette, but so happy you're here to report. That in it's self is huge. Did you regain feeling or have any other long lasting negative results? If your friend/doc has had success's get him to introduce you to the success stories. That's what friends do right? I sure hope he'll take this next step for ya Dan, sounds like he's got your best interests at heart. Zero docs have sought me out at my place of biz to tell me they're concerned and may have an option. That's pretty koo-koo-ka-chooo, I think. hugs, Cindy
  5. Denny! Wow. I'm so happy you were there. Moments of life that change ones life forever are damn scary bizness! So, so happy you were there to make a difference. Lotsa Love -Cindy
  6. 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
  7. b.g. you might find the results of the recently posted Clusterheadache.com survey interesting.....seems you're not alone "This cluster headaches survey was conducted from May 23, 1999 thru Jan 20, 2013 and was completed by more than 12,000 cluster headache sufferers."Â Scroll down to "Click this button......" tab http://www.clusterheadaches.com/survey/index.html
  8. Yes. It's scary, I know. I was an left-sided episodic beginning at age 15. Average cycle return was about 12-18 months. I was diagnosed right away (contrary to many)...and had an old cuss for a neuro. He told me "The good news is you're young so you should grow out of these in you 30's or 40's." At age 39 I went through a 5 month cycle and when it was over, it was just like any other cycle ending. Nothing notable. Kaput, over. When it was time for my next cycle, NO SHOW! 9 full years of remission! I totally believed the old cuss was right. In 2008, it jumped sides but I argued with my updated neuro for months because I didn't have a single attack, just nerve pain or shadows from hell. It took nearly 5 months before I actually had an attack. I was a right-sided chronic up until 164 days ago. xox I think it was a standard "hope" line they fed many back in the day, who knows? Updated neuro wouldn't confirm when I asked. Good old boys club, I guess. This place is far more hopeful, IMHO.Â
  9. PS The last site?? Fertility site dedicated to how to get PG! My welcome message just cracked me up. We'll have you buying booties soon! Oh I hate fibbin :D I said I wanted a multiple birth pregnancy :
  10. I've set "google alerts" for clusters, if it's mentioned in any news article or blog site, I get an alert. I average a dozen or so alerts per week. You would not believe the number of weird & specialized sites, lol. Gamers, Gardeners, Cartoonists....dancers (belly dancers, if I remember correctly) and they all have their personal forums. I become a member, get a user name create a password and try to answer the "alert". Dan, you would not believe the number of times I've seen the NatGeo special referenced by another CH aware person. I'm always trying to see if I know them some how from any other site, like facebook. I rarely do. Interestingly, many aren't patients themselves. They come right out and say so in their post. "Wow, those suck. I saw this documentary on NatGeo......., you should google it" or "psilocybin works, I saw it on NatGeo". Always thrills me to read this kind of awareness or at least association as a resource for help. I brush my hands together and say, "Thank you Dan & Lee Ann my work here is done!" LOL Hope your getting the Thank you vibes! ;D
  11. Well this thread cinches it for me ...I was actually thinking about skipping a year. OH HELL NO I need another therapy session from Doc Larry
  12. 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
  13. 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
  14. 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)
  15. We're only 2 weeks away from our 2nd annual Washington DC Advocacy trip! The inaugural learning curve, including the basic logistics of the 2 day event (which can often times be just as stressful as the actual meetings) is over & done....can we all say...."Whew, glad that's history!" It's been nice to start this years pre-event goodies without the stress of all that going on in the background too. In early February we created and posted a fundraiser dedicated to the event. The fundraiser started out with such velocity, I really thought we'd be able to skip the PB&J sack lunches! lol Here's where we're at today, as far as donations go.....  http://www.causes.com/actions/1735190-funding-headache-on-the-hill-advocacy-project-10-at-a-time ....of course new donations are always welcome Last year the AHDA provided a Webinar training session prior to the event. I wasn't able to log on and participate so when the live training session was held in the hotel lobby the day before the meeting day, I was ready with my smartphone shooting video. I watched it 20 x's that night! LOL. Here's the footage if you'd like to see the training...... https://www.facebook.com/photo.php?v=3802559710035&l=184186757243824696 ....it's posted on my Facebook page, but FB assures me that you don't have to be a FB user to view the footage If you are a Facebook user, we also created an "Event" and invited the world, lol. We made it "public" meaning anyone in the world could share the event with anyone else in the world. To me, seeing the responses come in and the posts people have shared on the event page has been one of the sweetest pleasures of this years event. Many are going "in spirit" this year! My hope is that as we proceed into the future, these "in spirit" people will become participants. We have nearly 100, it could happen! Here's the event page. Please click on "going" and post "in spirit" in the comments. https://www.facebook.com/events/209678842508170/ The 2013 HOH Clusterbuster team is 20 strong! Here's the map of the team members and where they're from. To view a list of names click on the"View" tab then choose "List" from the drop down menu. It's not the default view of the application, but it's a great way to see the team at-a-glance. I've included the congressional HELP committee members too. They're the black markers. Go to the bottom (under the map) to find the map legend. Uncheck HELP committee to view the team (red markers). http://www.zeemaps.com/map?group=500380# For the next 2 weeks I plan to hone in on my message so that it's memorable, effective and fun too. Last year, several members of our team met with Legislative Assistants who are 20 somethings and boy are they sharp! I'm going to start one more topic in the Advocacy area because I'd really like to hear what you guys would say to your congressional reps if you were going! And I mean anything!!!! you never know if what you have to share is something that triggers what I like to call an "Aha moment". A key ingredient or thought I could include in my message??? It's so exciting to watch this thing grow! I can envision a day when the disconnect between need and funding are a thing of the past. Cindy
  16. Headache on the Hill description letter from Dr. Robert Shapiro I found this letter while reviewing last years emails from Dr. Shapiro, President of The Alliance for Headache Disorders Advocacy. It's lengthy but well worth the read as a refresher for last years team and an introduction for the new team members. Cindy 8-) "Kim tells me that there may be some anxiety about what to expect while visiting Congress and that it may be useful at this time for me to provide some information about how to prepare for HOH. These first time concerns are normal. But I think (I hope) that you will find visiting the offices of your Members of Congress to be exciting, gratifying, and fun. You really will have an opportunity to influence the opinions of the people who set federal policy. It is necessary to state, however, that there are a few things that visiting Congress isn’t. It isn’t a “March on Washington”. It isn’t an argument. It isn’t an opportunity to say everything that you’ve finally wanted to get off your chest. It is a conversation and maybe even a bit of a sales pitch. Above all, it’s a team effort. The only way to move forward any issue of value before Congress is for a group of people to speak in concert the same message - and to as many members of Congress as possible. On 3/27, we expect in the neighborhood of 65 people from about 35 states to visit about a quarter of the Congressional offices. There will be patients and their families, but there will also be doctors, nurses, psychologists, sociologists, journalists, bloggers, authors, etc. This is the strength in numbers of HOH. You will be visiting the offices of both of your Senators as well as the Congressman from your district. If you have another address that is in a different congressional district, you may receive an appointment for that office as well. You will usually be visiting offices in pairs, sometimes alone, sometimes in larger groups (especially likely for the Senators’ offices). Some of the appointments will include the Members of Congress themselves, but most will be with members of their staff without the Congressman. This is not at all a consolation prize or a problem. The Hill staff are often in their 20’s, but they are almost all incredibly smart, very fast learners, and, most importantly, have enormous influence over the opinions of their bosses. It is essential to treat Hill staff as if you are talking to the Senator him/herself. Your Hill meetings will be much shorter than you expect them to be too. This may seem frustrating since many of you will be coming a great distance and at real expense. Meetings range from 10 mins to 30mins, but are usually on the shorter end of that range. Again, please don’t conclude that if your meeting only lasts for 10 min for that your message wasn’t received or that you did not have an impact. This is simply the standard format for visiting Congress. It holds true for every advocacy group that comes to Washington, which is to say every group that understands the crucial importance of coming to Washington also accepts these constraints. During your Hill visits you will be conveying the specific legislative “asks” or requests of Congress that we at AHDA are developing for the group this year, and which build on the work of past HOHs. These asks are sometimes technical, such as supporting a piece of legislation or signing a letter of support. You will not be able to make specific legislative asks of your own at HOH. There simply isn’t enough time at these meetings and, again, the close coordination of the asks across the group is a key part of the teamwork of HOH that allows us to have any effectiveness at all in moving forward. One thing that you definitely should not talk about during Hill visits is the use of psilocybin or other hallucinogens in the care of cluster, that is, unless a congressional staffer raises this issue first. Personally, I am very much in support of research in this area, but it cannot be the position of the AHDA at this time to make the case for the use of DEA scheduled substances against federal law. I really am sorry about this but those are our constraints. If you feel that you do not want to come to HOH under these circumstances, I certainly understand, but please let me know now. This is not to say that you will not have an opportunity to speak your mind at your Hill visits, but it definitely will be shorter than you would like or expect. Specifically, it is very important and effective to explain succinctly what compelled you to come to Washington. For individuals with disabling headache disorders or their family members, this testimony most often takes the form of a story about the illness and its impact. You should be able to tell this story in no more than 3 min maximum. I know this sounds ridiculous, but it is nevertheless all the time that you will likely have, without crowding out the time to explain the asks, which is the real work of the meetings. So you should think carefully about what you want to say about how cluster headache has impacted you, and possibly rehearse the story so that it is 3 mins or less, but doesn’t sound like a speech. From my knowledge of cluster headache, I am sure that your stories will be extraordinary and compelling. You will finally have a chance to tell your stories to people that are in a position to make a difference. You will receive much more training on how to visit Hill offices. There will be a Webinar with on-line training on 3/21 at 9PM EST (more info to follow soon). There will be further training on site at the Radisson on the afternoon of 3/26, including role-play to allow you to get the feel of the visits. Even if you will be visiting a congressional office on your own on 3/27, you should feel prepared for the meeting by the time the training has been completed. Once you have had your first Hill meeting, the rest will be much easier. You’ll see. I really look forward to meeting you all in DC. This is a first and very important contribution that you will be making on behalf of the quarter of a million Americans with cluster headache." Thanks very much, Bob Robert E. Shapiro, MD, PhD Professor of Neurology University of Vermont College of Medicine Arnold 2435B, University Health Center Watch this thread for new posts!!! Maybe the webinar training??? Not sure, but if you'd like to follow along with your team please mark this thread as a "favorite" and look forward to updates!
  17. Wow! Thank you! We're up to $1350.00 With just a little over 3 weeks to go before your cluster headache patient team hits the Capitol steps, (representing all primary headache patients) we're challenging you to set a goal of donating $10 or encouraging another someone to donate $10! That's easy, right? I was amazed at the positive response I received when I emailed the fundraiser to my email contacts. From incredibly kind notes of support for living a life with this horrible pain to a very generous friend giving $500.00! Really surprising because these are the same people I've shared with over the years and believed they were less than empathetic. It's almost as though going to Congress underscores the severity....I mean, who goes to Congress over a headache? Right? After you've sent the fundraiser out to your email contacts (or shared on social media....I think there's a hashtag for twitter #headacheonthehill too) Please pop over to the Advocacy thread to read more about what we'll actually be doing when we get to our meetings. And then take a peak at the Clusterbusters team map! We've nearly doubled our team size from last year. 21 cluster headache advocates for HOH 2013. I expect this years entire team to be near 80 total advocates!!! http://www.zeemaps.com/map?group=500380
  18. Sequester my hynnie! lol Storm the castle!!!!!! (hynnie is a word, right?) :-? Fundraiser is up to $1,325.00 now!
  19. Hi Racer! Nothing is normal in politics these days!!! We did get your CB registration and will follow up with you on this, and let you know. So happy you're joining the group!!! ;D
  20. Clusterbusters advocacy team needs your help! We created a fundraiser and published it on "Causes" just a few days ago. We've already raised $1025.00! Using the "Causes" online platform is great because it allows us to see exactly how many dollars are being donated to the specific event. Clusterbusters recognized that many who have the passion to represent our patient group at the Capital may also need assistance for things such as travel money in order to be able to attend the event. Our goal is to match funds with passionate people! Applicants to the event have requested $5915.00, so you can see we still have a ways to go in order to meet all the requests. Here's the link and the entire fundraiser as it appears on Causes. What I really like about Causes is that they offer several ways to get the word out, including Twitter, Facebook and Email. I've been amazed at the responses from my email contacts! Please click on the link, share with your contacts too! http://www.causes.com/actions/1735190-funding-headache-on-the-hill-advocacy-project-10-at-a-time [move]     "Headache on the Hill" Advocacy Fundraiser Project Needs Your Help    [/move] We've all had a headache or two in our lives, right? If you've ever experienced a headache, click and donate $10! Better yet, donate ten a Jefferson's! In honor of President Thomas Jefferson who also suffered from headaches and chronicled his experiences in his journals. 1764 March 20. (Jefferson to William Fleming). "I will endeavor to answer it as circumstantially as the hour of the night, and a violent head act, with which I have been afflicted these two days...My head achs, my candle is just going out..." http://www.monticello.org/site/research-and-collections/headaches According to the World Health Organization primary headaches (migraines, cluster's, SUNCT) are the 19th leading cause of lives lived with a disability in the United States. Nearly 60 million US citizens will suffer a migraine this year alone. Half will go undiagnosed, left to treat the pain with over-the-counter analgesics. Imagine how the number increases when you expand the demographics to include ALL untreated primary headache patients (cluster headache, SUNCT, et. al) to the entire world! It's incredible to think with the prevalence of this patient group, experiencing such relentless pain, that it is so widely overlooked and marginalized by health care systems. Having a primary headache disorder is NOT a weakness. Headache disorders are a malfunction of the brain and can be seriously disabling. Increasing the amount of research provides the platform for new treatments! Help the "Headache on the Hill" team convey this message to Congress & the National Institute of Health by donating $10 now (about the cost of a bottle of Advil). The Alliance for Headache Disorders Advocacy (AHDA) is an organization started by health care providers in 2007. United in an assembly of equally concerned organizations, the AHDA and their members went to congress and began the conversation in regards to this patient group. Detailing the impact of neglect, emphasizing the most recent treatments are over 25 years old, and the need for federal remedies. In 2012, 62 participants from 33 states visited 120 congressional offices. Learn more about The AHDA by going here.... http://www.allianceforheadacheadvocacy.org/ Learn more about the event by going here.... http://events.r20.constantcontact.com/register/event?llr=asfwt7iab&oeidk=a07e6y8jz2d093250aa $10 will make a difference! CLICK-DONATE-SHARE Thank you for your support. 100% of the funds raised through this cause will go toward assisting participants of the Clusterbuster advocacy team carry this message to Washington DC. In order to ensure the success of this trip, those who have the passion to participate rely on your generous donations. Please help ensure this trip's success! Again, we thank you for your support.
  21. Do you mean in connection with Clusterbusters BB? Here's something that's really exciting in terms of research & I believe may offer exciting possibilities for our patient group..... http://www.nytimes.com/2013/02/18/science/project-seeks-to-build-map-of-human-brain.html?pagewanted=all&_r=3& http://cosmiclog.nbcnews.com/_news/2013/02/18/17007438-how-researchers-shaped-the-white-houses-brain-mapping-initiative?lite Did you get the "Join us in Washington DC" Event email? Some servers may have blocked it, but you can access the link by clicking on the link just below my signature statement in redÂ
  22. Thanks for sharing swiftlaw My favorite part of the article is where the author shares "many people decide to quit taking prescription medications due to nasty side effects". If that thought (and what it truly means) would resonate like LOUD SCREAMING & BANGING NOISES do while nursing a hangover headache, lol, in every single primary headache research scientists brain we could look forward to a trend away from "headgear" towards BOL. I'd wear it to a trekkie convention! And I'm not even a trekkie!
  23. The article shaved off (potentially) years towards gaining "overnight success". I have democrats for representatives. Persuasion to include "primary headache" patients into the mix of this mapping plan seems exponentially easier than suggesting the mapping plan in the first place! There is a CH God! http://www.nytimes.com/2013/02/18/science/project-seeks-to-build-map-of-human-brain.html?pagewanted=all&_r=4&
  24. Thanks shocked! I'm grateful the guy mentions CH in any interview:) Good for our patient group for sure.
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