mrweekend Posted July 30, 2014 Share Posted July 30, 2014 The Clusterbusters, Inc. 9th Annual Cluster Headache Conference is only 48 days away. This year's lineup of speakers will educate, entice and hopefully entertain all that attend. Here is a list of the speakers and a small background on most of them. We are waiting on some info on a few and I will post them when they come in. If you have never attended one of these conferences, I urge you to consider coming to Nashville this Sept 18-21. The speakers are wonderful, and it will likely be the largest collection of clusterheads ever assembled. My first convention was a life changing event. You will not want to miss this convention! The links to register and make hotel reservations are below. http://events.r20.constantcontact.com/register/event?oeidk=a07e8pr6aa003823ed7&llr=asfwt7iab Bob Wold - Bob is founder and President of Clusterbusters, Inc., a 501c3 non-profit charitable organization dedicated to the research of cluster headache and to support people with cluster headache and their families. Based in greater Chicago with his wife and 4 children, Mr. Wold has talked to 1000s of cluster sufferers. In fact, over 25 years of his adult life was burdened with severe cluster headache that was resistant to all standard treatments. That all changed after he tried psilocybin, which has helped regain control over this illness for him and now hundreds to perhaps thousands of other cluster headache patients all over the world. Recently, along with Dr. Larry Shcor and Dr. Robert Shapiro, Bob helped develop the "Cluster Headache Fact Sheet" for use by the National Suicide Prevention Lifeline 1-800-273-TALK. The sheet can be downloaded from this page: http://www.crisiscentersblog.com/?p=2382. Bob will present a brief history of Clusterbusters, review the last year, and address plans for the coming year. Lee Markins - Lee has experienced cluster headache for most of his life, having gone from chronic for 19 years to episodic for 28 years and now back to chronic. A strong advocate for CH, he has attended the last three Headache on the Hill meetings in Washington DC. This is his second year as Chair Person for the Clusterbusters Annual Headache Conferences. Brian E. McGeeney, M.D. , MPH - Dr. Brian E. McGeeney, is a neurologist at Boston Medical Center and full time faculty (Assistant Professor of Neurology) at Boston University School of Medicine. Dr McGeeney is a Diplomat of the American Board of Psychiatry and Neurology, with the added qualification in Pain Medicine. Dr McGeeney is also boarded by the American Board of Pain Medicine and holds the United Council on Neurologic Subspecialties board in Headache Medicine. Dr. McGeeney will explore some historical aspects of this disorder, some important people in the initial description and treatment and how to make a good diagnosis. The discussion will also review some related disorders that can mimic cluster headache. The treatment of cluster headache will feature prominently in the presentation. Dr. McGeeney will be the keynote speaker. Larry Schor, Ph.D. - Dr. Schor is a Professor of Psychology at the University of West Georgia and a licensed psychotherapist, who will focus on the psychological aspects of CH. He is a Licensed Professional Counselor and Certified Professional Counselor Supervisor in Georgia. His research, teaching, and practice focus on the psychological effects and treatment of trauma. He is particularly interested in states of consciousness associated with trauma and pain; especially alterations in consciousness associated with cluster headaches. Mr. Bill Mingus - Bill is a long time veteran of cluster headache. He has been active in the online community and was a member of OUCH USA for many years. Considered by many as an expert on the use of oxygen in the management of cluster headache, Bill will share his knowledge during a breakout session "Oxygen - Making It Work For You. A Hands On Demonstration and Discussion". This will be an opportunity to learn more about oxygen use including tips and tricks to optimize its effectiveness. Lisa Hertz - Lisa is an English Teacher and marathon swimmer from St. Petersburg, FL. She was diagnosed with chronic cluster headaches in 2006, and started seeking alternative treatment methods in the summer of 2007 after being hospitalized with cluster headaches and serious asthma complications. Last year, Lisa won a 12 mile marathon swim race around Charleston, SC and was only one of five swimmers to make it across rough conditions of the 24 Mile Tampa Bay Swim. In Lisa’s presentation, she will discuss overcoming multiple health issues and the importance of a positive mindset. Emmanuelle Schindler, M.D., Ph.D. - Dr. Schindler is a Neurologist at Yale School of Medicine. She received a B.S. in Biological Psychology at the College of William & Mary in 2003 graduating Summa cum laude. She received her MD and PHD in Neuroscience from Drexel University College of Medicine. She has won several awards and honors including the American Academy of Neurology Award, Excellence in Neurology-May 2012. She has numerous publications. Dr. Schindler will be presenting the results of Clusterbusters Medication Use Survey. James Fadiman, Ph.D. - Dr. Fadiman did his undergraduate work at Harvard and his graduate work at Stanford, doing research with the Harvard Group, the West Coast Research group in Menlo Park, and Ken Kesey. A former president of the Institute of Noetic Sciences and a professor of psychology, he teaches at the Institute of Transpersonal Psychology, which he helped found in 1975. An international conference presenter, workshop leader, management consultant, and author of several books, he lives in Menlo Park, California, with his filmmaker wife Dorothy. Dr. Fadiman will present on the safety and setting of using alternative treatments for cluster headaches. Alexis Williams - Alexis will present a discussion for family members and friends who support cluster headache patients. As support is one of if not the most important part of living with cluster headaches, it’s as important for us to listen to their concerns and understand their part in a family with clusters, as it is for sufferers to be understood. We are all in this together and the emotional strain and pain we all deal with needs to be explored and understood. Advocacy Panel - An update on CBs advocacy efforts including a report on this year’s Headache on the Hill. The Clusterbusters advocacy team will address updates on our efforts and the progress we've made and discuss the coming year's events. An interactive session looking at our work on Capitol Hill, Television, Radio and print as well as our presence on the internet. Anjan Chatterjee, M.D., MPH, MBA -Dr. Chatterjee is board certified in Neurology and Psychiatry. Dr. Chatterjee has more than two decades of direct patient care experience, treating patients with a wide variety of neurological and psychiatric disorders. Over the last decade, Dr. Chatterjee has worked at Merck Research Labs and Pfizer to develop neuroscience medicines. Recently, Dr. Chatterjee founded VR1 Inc. VR1 focuses on providing treatments to address acute pain associated with migraine and other severe headache conditions, including Ausanil®– a non-prescription, homeopathic nasal spray for severe headaches and migraines. There will be two medical device company presentations. I am not sure who will be speaking. ElectroCore, LLC - ElectroCore is a US based electroceutical healthcare company, which is developing a range of non-invasive Vagus Nerve Stimulation (nVNS) patient administered therapies for the treatment of multiple conditions in neurology, psychiatry, gastroenterology and other fields. Initial focus is on primary headache (migraine and cluster headache), with trials continuing in epilepsy, gastric motility disorders, and depression and anxiety. Autonomic Technologies Inc - is a medical device company focused on the development and commercialization of innovative therapies for the treatment of severe headache. The company’s initial product, the ATI Neurostimulation System, is approved in Europe for the treatment of cluster headache and is currently being investigated in a multi-center, randomized study for the treatment of high frequency, high disability migraine. Questions? info@clusterbusters.com Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted July 30, 2014 Share Posted July 30, 2014 Is Lisa Hertz here on the msg board? Apparently we're neighbors and didn't know it. Lisa shout out and ping me if you're there I'm in Seminole near Madeira. J Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 30, 2014 Share Posted July 30, 2014 Hertz -- definitely a good name for someone with CH. Quote Link to comment Share on other sites More sharing options...
FunGuy Posted August 5, 2014 Share Posted August 5, 2014 The Clusterbusters, Inc. 9th Annual Cluster Headache Conference in Nashville TN, is now only 45 days away. This year's lineup of speakers will educate, entice and hopefully entertain all that attend during the September 18 to 21, 2014 weekend. If you are planning on making it to this event, we urge you to register and make your hotel reservations, if you need them, as soon as possible.  Attendance is running higher than last year and we have a limited number of rooms remaining. There are other hotels nearby if the room block at the Inn at Opryland fills. There are many things that need to be planned based upon total attendance and the earlier we have a good number on how many are attending, the easier it is for us to plan ahead and make the conference as enjoyable for everyone as we can. Please register through the link below to assist us in planning. http://events.r20.constantcontact.com/register/event?oeidk=a07e8pr6aa003823ed7&llr=asfwt7iab What a line-up of speakers!! (see above) Questions: info@clusterbusters.com Quote Link to comment Share on other sites More sharing options...
mrweekend Posted August 31, 2014 Author Share Posted August 31, 2014 I missed one of the speakers on the syllabus. Sorry about that, Hipshot! •Dan Ervin Dan is a 56 year old man who has experienced chronic cluster headaches since the onset of the disorder eleven years ago. He has tried most every medication available and every surgical procedure short of deep brain stimulation. Known as “Hollywood” among the cluster headache community, Dan volunteered to host a National Geographic film crew from London to document his use of mushrooms to successfully treat cluster headaches. Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 31, 2014 Share Posted August 31, 2014 Yay!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 31, 2014 Share Posted August 31, 2014 It's very late for me to putting in this two-cents-worth, but I wonder whether there would be any way to create some kind of organized discussion about obtaining SSI Disability status. Maybe there's not much to say, and maybe there's not much interest, but it is a topic we've discussed here at the board from time to time, and I'm curious about stories of success (and non-success) in getting disability. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted September 12, 2014 Share Posted September 12, 2014 Hello Jerry, I think that SS Disability in order to get Medicare is a very important issue. It took me four long years of denials and appeals to finally get approved. I'm sure a lot of people quit in disgust after the first or second denial. That is by design. The SS Administration is betting those that apply will die or give up during a deliberately designed lengthy approval process. See you guys next week Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted September 23, 2014 Share Posted September 23, 2014 is Bill Mingus on Facebook? can't find him Quote Link to comment Share on other sites More sharing options...
mff181 Posted September 23, 2014 Share Posted September 23, 2014 is Bill Mingus on Facebook? can't find him I have his wife on FB but cannot find Bill. I didn't ask her if he's on I just told her to let him know we all missed him in Nashville and feel terrible about what happened. Basically just said that they'd be in my thoughts and that if they need anything to just ask me. Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted September 23, 2014 Share Posted September 23, 2014 is Bill Mingus on Facebook? can't find him Nah......never have done the FB thing. On Twitter, CH.com and here....that's about all I can keep up with. I have his wife on FB but cannot find Bill. I didn't ask her if he's on I just told her to let him know we all missed him in Nashville and feel terrible about what happened. Basically just said that they'd be in my thoughts and that if they need anything to just ask me. I certainly appreciate the kind words. The past week has been a very rough one but it's getting better in small.....very small ways. Not much would keep me from attending a CH conference but family is always the top priority. Quote Link to comment Share on other sites More sharing options...
rockhopper Posted September 24, 2014 Share Posted September 24, 2014 Hi guys, does anyone of you happen to know when and where the pics/videos of the conference will be published? I'd really like to show them to my gf and family back in Germany . Many pf days, Tim Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 24, 2014 Share Posted September 24, 2014 There are a lot of nice pics at Jeffrey Rowland's Facebook page: https://www.facebook.com/jeffreyrowland/media_set?set=a.10202771127670483.1073741841.1568931597&type=1 And the lovely group one at CB Facebook page: https://www.facebook.com/clusterbusters/photos/a.212157205559821.44197.102168033225406/621289351313269/?type=1&theater Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted September 24, 2014 Share Posted September 24, 2014 There are a lot of nice pics at Jeffrey Rowland's Facebook page: https://www.facebook.com/jeffreyrowland/media_set?set=a.10202771127670483.1073741841.1568931597&type=1 Which are unaccessable to people without a FB account. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted October 2, 2014 Share Posted October 2, 2014 Thanks for heading up the best conference to date Lee. For those who haven't attended, it will change your life. I look forward to seeing y'all in DC and Chicago next year. Dan Quote Link to comment Share on other sites More sharing options...
Jeffrey Posted October 7, 2014 Share Posted October 7, 2014 Bob W. now has pictures from 2014 Nashville. He had indicated that he wanted to be able to make them available on the website. I simply have too many to be able to send them via email..... Perhaps I need to check out photobucket ? jr Quote Link to comment Share on other sites More sharing options...
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