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Psiloscribe

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  1. Here is our report on our trip to DC. Enjoy!

    Headache on the Hill 2014

    Collaboration

    In order to gain forward momentum, collaboration is required. The reward? A profoundly deep and enriched sense of community.

    "Coming together is a beginning, staying together is progress, and working together is success." - Henry Ford

    The Alliance (AHDA)

    In the fall of 2011, Clusterbusters joined The Alliance for Headache Disorders Advocacy, sending our first team of advocates to the Capitol in the spring of 2012. The Alliance truly embodies remarkable resolve toward the care and commitment to excellence in medicine for all primary headache patients.

    Travel and the Polar Vortex

    Past Headache on the Hill (HOH) events have been held in the spring months of March and April. Since this was our first year to have winter appointments, many were concerned about safe travel. Normal winter weather can affect travel plans with delays, etc., but this was no normal winter! All over the nation, polar vortex warnings bombarded the news. Still, we nearly doubled our team. Just two days later, the capitol closed due to the severe conditions. Serendipity?

    Arrivals and Training Day

    Everyone arrives with their own blend of excitement, purpose and trepidation. During our time in Washington DC, the lobby of the hotel served as a hub. Lively consortiums of advocates greet one another here exchanging just the right dose of kinship. By Monday afternoon, the room smoothly transitions into the backdrop for filming our first national media coverage (see Media on The Hill section for complete details). Slowly the lobby thins as we make our way towards the meeting room where we reassemble and training begins.

    Opening remarks put an emphasis on our collective approach to the Tuesday appointments. Everyone in the room is acknowledged as being a vital part of the process. Patients, neurologists and members of professional organizations each play an important role in our success. From here, two major themes begin to emerge. The first is “HOH is a conversation”. And the second is, “Primary headaches are costly, prevalent and neglected”.

    As the training continues, it becomes clear not only are primary headaches neglected by the National Institutes of Health (NIH) but all of neurology is neglected. To combat this neglect, the American Academy of Neurology (AAN) hosts a similar event known as Neurology on the Hill (NOH) annually. Knowing this makes it all that much easier to become an advocate and to be part of the conversation. Next time you have an appointment, please let your neurologist know you support both HOH and NOH and urge them to take part.

    The Requests aka “Asks”

    Each year, The Alliance Board of Directors prioritizes the talking points for HOH. These are refined and eventually become the requests which are often referred to as our “asks”.

    An introduction outlining the Burden of the Disorders is included and punctuates the need for all the “asks” to be granted. Together this material becomes what is known as our “Leave Behinds”. The following is an abbreviated version outlining our requests with links to access the actual “Leave Behinds”

    1- We will ask NIH to give us a fix for the unfair reviews that grants for migraine and cluster headache are getting. This may seem like a technical thing but would make a huge difference towards boosting research, as many researchers are turned off by perceived unfairness in the review process. Leave Behind_Ask 1

    2- We will ask Medicare to cover oxygen for cluster headache Leave Behind_Ask 2

    3- We will ask the Senate to renew funding through the military budget for funding for chronic migraine and post-concussive headache. Leave Behind_Ask 3

    As we near the end of the training session a mock meeting is held. It is a lot of information to take in, but one thing is certain, all advocates are held in high regard as we simultaneously coalesce into a team.

    Hallmark of Collaboration

    As primary headache patients we know there are hundreds upon hundreds of possible requests which makes choosing three a very difficult task. This year, the first cluster headache patient specific ask was included. When you consider prevalence of the different primary headache patient groups, this was a huge acknowledgement to us and our advocacy work with The Alliance. Huge!

    Meeting Day

    Clusterbusters sent 35 participants from 18 states to join The Alliance for Headache Disorders Advocacy 7th annual “Headache on the Hill”. The total HOH team consisted of 77 advocates from 34 states who held meetings with 162 offices. To see the growth of the team and the progress achieved from year to year click on History of Clusterbusters attending HOH . It is impressive!

    After meeting on the capitol steps for a quick group photo we head off to our respective meetings. Warming up over a cup of coffee, Tom Klouda, US Senate Finance Committee hand delivers Social Security Administrations (SSA) Commissioner Carolyn Colvin’s response to cluster headache advocate, John Bebee. Recall in 2013 one of our requests was for the SSA to add both migraine and cluster headache to the Blue Book of Disabilities Listing. Although the response did not fulfill the requested action, adhering to our own theme of “It’s a conversation” we now have something to respond to. For SSA to completely ignore our request would have been far worse.

    The most compelling response coming out of the day was the overwhelming support of our request to overturn the CMS decision denying coverage of oxygen to cluster headache patients on Medicare. In fact, at the time of this writing Senator Mike Johanns (Nebraska) office has agreed to write a colleague letter. Once the letter is written it will be circulated throughout the capitol, gathering signatures of all those in support.

    We are very optimistic about upcoming changes in regards to the oxygen ask. Most of our advocates were able to secure pledges to sign a letter once it was written, from their congressmen. Everyone went in equipped to explain this addition of 02 coverage would both save money and supply an important first line treatment to help people suffering the type of pain they described. Doctors, migraineurs and cluster teams all came back with pledges. The Alliance is now making sure these pledges are kept.

    Bicameral –Bipartisan

    Primary headaches affect nearly every family in the United States, including congressional families. Often during the meetings the member (or their staff) will begin personally relating by saying “my father suffers” or “my aunt has migraines”. The prevalence is never disputed.

    Let’s take these thoughts one step further. Primary headaches definitely cross both bicameral (House & Senate) and bipartisan (Democrat & Republican) lines. In fact, advocates recap meeting responsiveness at the end of the day and highlight the “identifying” moment. We revel in these encouraging stories because odds are, these same members are equally excited to share our visit (and hope) with their own loved ones. Bottom line is everyone recognizes primary headaches impact a lot of people. We can just imagine their thoughts; “Of course this needs to be addressed” or “why hasn’t this been done already?”

    Media on the Hill

    In January, the consistency of our advocacy work along with the generosity of Ascot Media Group, Inc. produced the first nationwide Clusterbusters Press Release and yielded unprecedented media coverage.

    As a direct result of these efforts we received the following note from NBC;

    “Your WGAL-TV piece on cluster headache was syndicated and appeared in the following outlets:

    (see complete station list here) Thank you for participating in this interesting and illuminating piece.”

    http://www.wgal.com/health/video-cluster-headaches-cause-agony-for-sufferers/24677706

    Dr. William Young, president of the AHDA and Clusterbusters Medical Advisory Board member teamed with advocate, Kirt Kessler to do the WGAL news piece. When WGAL confirmed their interest in doing the story, Clusterbusters was able to contact Kirt via the Cluster Headache Worldwide Map (please add your name). The map began as tool to end the isolation cluster patients experience by finding a local buddy and turned into an advocate resource. ThatÂ’s excellence in collaboration!

    Many other news stories featuring cluster headache advocates were seen in print or were aired in the US media prior to, during and after our trip to the capitol. We extend a sincere “Thank you” to those who reached out to their local media connections and contributed. Each of these stories does make a difference; in fact we are certain these stories played a major role in attracting Al Jazeera America to film and produce the following piece during HOH. Reporter Tom Ackerman opens the story stating…

    “Describing the pain of a cluster headache is one thing, showing it is quite another as many patients have done by recording their own experience.” –Tom Ackerman, Washington DC

    Al Jazeera America Cluster-Headache-Patients-Seek-Pain-Relief-youtube-video

    What You Can Do

    There are numerous ways to participate in this growing community of primary headache advocates. When you upload a YouTube video or comment on news stories you are being an advocate. When you join and share via social media sites, you are being an advocate. When you donate to our fundraising efforts, you are being an advocate. Advocacy is an act of self-empowerment where one refuses to remain isolated and joins the conversation.

    Now is the time for all headache patients to politely yet firmly share our collective message with our US Representatives. Diana Lee, HOH advocate, writer and attorney shares in her blog titled “Taking Migraine to Capitol Hill for HOH ’14-What You Can Do” a wealth of information including easy-to-follow instructions to help you get started. This is a great resource on how you can let your representatives know you support the efforts of the Headache on the Hill team. Included within are office addresses, a complete recap of our “asks” and template letters. Let us know you’ve acted. Send a comment to us!

    What You Can Do-Write Your Representatives Today

    Fundraising Video Victory

    Our first HOH fundraising video is another great example of the fruits enjoyed when folks begin collaborating. Mollie Markins, daughter of advocate Lee Markins, United Way Videographer and owner of Markins Media began filming willing spokespersons 2 years ago during the 7th Annual Clusterbusters Cluster Headache Conference in Las Vegas. Mollie wrote, directed and produced this amazing video. 100% of this work was done with volunteer hours. The final 4:07 minute video was published on our “Causes” website where more than 200 people “Pledged” to share the video. Thank you to all who took the “Pledge” and shared. We nearly doubled previous HOH fundraising efforts because you did!

    Clusterbusters 2014 HOH Fundraiser Campaign-Victory

    HOH Advocates Share

    John Bebee- “We have no greater honor but to fight for the rights of others. Our fight begins in solitary and ends in a very public fight to honor those who suffered before us, with us, and more importantly those who have not suffered yet. Social change begins with an outcry. Together we will make them hear. Join in help with support and participation; there is much pain to go around for motivation.”

    Natalie Hart- “My son, Austin Jamerson and I went to DC, Capitol Hill, Tues. Feb 11, 2014. The day before, in our conference room at the hotel all of the individual headache groups formed one big group named, 'Alliance for Headache Disorders Advocacy'. In the room there were doctors, nurses, sufferers of Clusters and Migraines etc. I was so relieved to have 4 more people from my state of California join my son and I.. Doctors who we shared the day with, walking one on one with him all over Capitol Hill from building to building, tell Austin to call anytime he needs them. Incredible experience. Priceless! Thank you #HOH2014

    Louise Barham- “ It is the most unforgettable experience to attend and participate in the HOH. Hopefully, Adam and I will never miss it.”

    Heather Keschinger- “This was my 2nd year with my husband, who suffers with Chronic Cluster headaches. 1st year was a total life changing experience for both of us. We are everyday people and would never think we would be on the hill advocating for anything! You feel normal because everyone’s story is similar and knowing we are all advocating for all Headache Disorders, the amazing people fighting through cluster attacks while on the hill , life altering.”

    Bill Mingus – “I felt we made our cause heard with those we spoke to and I got a chance to speak with a couple of medical professionals in my group about high flow O2 and the difference it could make in their patients lives.”

    Lee Markins- “HOH was a very moving and positive experience for me this year. One of our visits led us to the Senate floor while they were in session and we got to meet Senator Ayotte outside the chambers. During our visit we spoke of how headaches affect our lives and the need for research. The aides we visited listened and asked questions. I am waiting to hear back from them regarding our “asks”. I would recommend that anyone who suffers headaches attend this event. We can make a difference for millions of people.”

    Steve T Keschinger- “ Looking around the group, young and old alike, we all know the intensity of our condition. Now we are on Capitol Hill speaking with representatives and aides about our situation. The meetings are not stressful like I had imagined, just a chat around a table or a couple of hallway meetings. The aides are very receptive, let’s face it, who hasn’t had a headache? They understand and want to help. All the meetings are planned professionally. This is a great event to attend. Add it to your bucket list!”

    Cindy Reynolds- “For me, the highlight of the experience is always the peer to peer relationship with all the advocates, including some of the top neurologists in our country. I see firsthand how driven and determined each and every advocate is to increase headache research funding. Year after year HOH attendance increases, swifter responses are coming from the offices regarding out “asks” and the unity among patients & physicians is beyond uplifting!”

    Todd Pittard- “This was my second year attending and am happy to see the amazingly fast results each year. Truly a life changing event and am honored to be part of this team!

    Sincere Thanks

    To the 35 Clusterbusters HOH team members and their families who supported these advocates in order to continue our “conversation” on The Hill our sincerest “Thank You”. We know you contributed on many levels. You professionally represented not only your own powerful message but the entire patient group’s message of “Primary headaches are costly, prevalent and neglected”. Many of you came while managing your own pain. Our momentum continues to gain and attract new and positive attention because of your selfless gifts. A common understanding that attendees have is that although progress can be slow, progress is made. Our stories are heard and we build upon each event’s progress year after year. Empowerment increases as individuals make progress for not only themselves and their families, but for all cluster families. The rewards this type of advocacy work often provides far outweighs any thank you that we can offer. It was a privilege for us to witness this incredible collection of advocates doing wonderful work for others. You are making history, changing the past and improving the future.

    Thank you.

    Cindy Reynolds

    HOH Clusterbusters Event Coordinator

    advocacy@clusterbusters.com


  2. I received some terribly tragic news today that I'll share here because I know that some of the old-timers here will remember who the news is about.

    When Clusterbusters was just forming, I was contacted by the wife of a cluster sufferer. So I have known these people though email, postings & phone calls for about a dozen years.

    I am deeply saddened and downright distressed to say that I heard word today and confirmed this in news articles, that Jaques Dreyfus, known here and in the old yahoo group as Rex Tangle, took his own life and that of his wife, Heather.

    They were living in Portland when this happened a couple of weeks ago. News was being withheld because they needed to locate his family living in France.

    Heather was one of the nicest and most caring supporters I have met. Jaques, an accomplished musician always appeared to be a gentle and loving man. I am at a loss as to why this has happened. I probably never will be able to understand this terrible act and loss.

    Rex actually wrote a 10 song album for Clusterbusters many years ago. An instrumental set that was meant to be used as a peaceful background set for listening. One of the tracks was used for years on our old website. I'm sure some here remember listening to the tracks. I know some have the CD.

    I imagine the how and why isn't important. I do know that Jaques suffered greatly with clusters. He went through many of the same obstacles  we all seem to traverse. I know he once flew home to France to have major dental work done in an attempt to "fix" his clusters. I know that when they moved, Heather called looking for help in finding a good doctor and help in getting set up with 02. She would always be the one reaching out for help for Jaques.

    Maybe that was part of the problem. Rex couldn't reach out for help himself.

    I guess that is one reason I'm even posting this. To let everyone here know that if you need help, reach out for it. You owe it to yourself and you owe it to your supporters. There hasn't been a person born yet that hasn't needed help at some point. Leaving it up to your spouse or other loved ones is not only not fair, but destructive to yourself and your relationship.

    Everyone here knows how difficult life can be. No one would ever think less of you for reaching out for help. Quite the contrary. Reaching out shows not only strength but a determination to make a better life for everyone involved.

    I know that Rex had some very close friends here and I hope they don't mind my posting this. Rex did his share of supporting others here. Sometimes it's easier to offer support than ask for it.

    If you're interested in checking out his website, this is the link;

    http://www.rextangle.net/bio.html

    R.I.P. Heather and Jaques!

    Bobw


  3. I agree with Tony about what or who is behind this.

    That said, the page was a mess with a lot of bad information.

    Besides people not knowing clusters, but thinking they do, added a lot of bad info. One of the reasons for that is partly due to their rules.

    They will find very little secondary info on ANY cluster medications. There has been very little research and all but one drug is just a hand me down from other ailments and never tested in clusters. At least not "re-tested"

    This is partly due to the fact that when something starts working, and it has gone thru other safety testing, it isn't tested again. If it works, they use it.

    Take 02 for example. We have this same fight with Medicare and that's why we are going to DC.

    02 has been the gold standard in cluster abortives for 60 years. but there is very little research for 02 and clusters that would fit Wiki's rules for secondary proof.

    You want more proof? Ask the hundreds of thousands of cluster sufferers using it.

    As we are telling CMS, it would be unethical for further testing. Do we really need to give 100 cluster sufferers placebo air and make them suffer so that Wiki, and Medicare are satisfied?

    They have to decide if they want a "helpful" article or just an article.

    Do they have secondary proof that the hypothalamus is involved? Or are all mentions of it based upon Goadsby's small study using MRI's?

    These types of rules are what cause people to suffer for years either without 02 at all or getting a script that says use 4-6LPM. Doctors using old or censored information.

    Most things people are using to help with their clusters have come around over the last 15 years and only through anecdotal information. From high flow oxygen to cluster masks to energy drinks.

    People getting their "help" from Wiki will be 15 years behind.

    Unfortunately, there are many people that put rules above suffering.

    Bob


  4. I read one of his/her justifications that any reference to illegal substances shouldn't be included in medical information. 

    So is a page about cluster headaches a page of medical information? Awful wide brush.

    Wiki is not a medical journal. But even medical journals specifically run articles on treating various diseases and conditions with illegal drugs.

    Treating clusters with psychedelics is acceptable for The Lancet and Neurology and Cephalalgia but not Wikipedia?

    Funny if it wasn't so sad.

    if Wiki is a medical journal, then there are MANY pages devoted to illegal drugs. Pages on Psychedelic therapies.

    If it's just that cluster headaches are a medical journal, then research is one of the most important aspects of any medical journal. To researchers, there is no difference between psilocybin and CGRPs. They are all just molecules to them. You use the same keyboard to type up the research and same instruments to gage their actions. All the microscope sees is a molecule.

    Yes there are plenty of pages devoted to illness that reference illegal drugs.

    Example...

    OCD

    Psychedelics such as LSD, peyote, and tryptamine alkaloid psilocybin have been proposed as treatment due to their observed effects on OCD symptoms.[81][82] It has been hypothesised that hallucinogens may stimulate 5-HT2A receptors and, less significantly, 5-HT2C receptors, causing an inhibitory effect on the orbitofrontal cortex, an area of the brain strongly associated with hyperactivity and OCD.[83]

    with research cited.

    This is not an argument that can be won or lost. There is no legal, ethical or common sense ground that can be defended. It is just someone's misguided opinion at play and you can't win an argument with ignorance.

    I am actually happy to debate psychedelics when it comes to safety, efficacy, research, legalities, dangers, you name it. heck, I'm happy to debate them on moral grounds since I need to do that when research is involved. There is always a discussion on morals and ethics with ANY research like this and trying to get things past an IRB. Fine.

    But this isn't a debate. Since it can not be won, this person has decided to censor the discussion based upon his own personal feelings. We are not his children and "because I said so" is not an acceptable answer.

    This is exactly the type of thinking that has gotten us to the point where it is ok for someone to spend $100,000.00 having a wire inserted into the middle of his/her brain (experimentally) (and safe because only 1 person out of the first 6 died) but it's not ok to pick and consume a mushroom in an experiment to see if that same person can stop his/her clusters.

    Yes we are sometimes desperate and make bad decisions. One of those first 6 that had the DBS made a very bad decision, and died.

    But I don't want that information censored either.

    Over and out

    Bob


  5. We have come a long way and I want to thank everyone that frequents this message board and has been with us for all these years. Many people here are responsible for making Clusterbusters what we are and where we have arrived.

    We have been thru a few self-appointed censors along the way and run into more than a few roadblocks but because of many people here, we've kept our eye on the real reason we are here and do what needs to be done to move forward in a professional manner.

    Thanks to everyone for your support. Support of Clusterbusters and all the people it represents and thank you all for the support you've shown to me and my family.

    Bob


  6. Clusterbusters is both pleased and proud to announce the addition of a medical advisory board to our organization.

    This review and advisory board includes some of the finest headache specialists and health professionals in the country.

    We greatly appreciate these board memberÂ’s input in our educational, advocacy, awareness and research endeavors and their assistance in helping make Clusterbusters a leading and trusted voice within the patient, medical and governmental administration communities.

    Our health professionals help design and facilitate our programs to educate and advocate for patients, their supporters, other medical professionals and government agencies.

    Clusterbusters fully understands that along with chronic pain conditions such as cluster headaches and other headache disorders, there are also many psychological issues that need to be addressed. Because of this we have professionals on the board that deal directly with these issues.

    The new members of our Advisory Board are;

    Dr. Robert E. Shapiro

    Department of Neurological Sciences

    University of Vermont College of Medicine

    Dr. William B. Young

    Thomas Jefferson University Hospital

    Philadelphia, PA

    Jefferson University Physician

    Dr. Brian E. McGeeney

    Assistant Professor of Neurology

    Boston University School of Medicine

    Boston Veterans Administration Medical Center

    Boston, MA

    Dr. John Halpern

    Assistant Professor of Psychiatry

    Harvard Medical School

    Boston, MA, USA

    Biological Psychiatry

    McLean Hospital

    Dr. Larry Schor, PhD

    Professor of Psychology

    University of West Georgia


  7. I want to thank everyone for your efforts on this.

    It is a very important issue. I'm sorry but the board of directors of Clusterbusters just does not have the time to chase this person around the internet. We are very busy trying to get things done and make some progress.

    Wikipedia is an international site that covers more than just the US and laws in the US should not stop any site from publishing the truth. Laws regarding psychedelics change from country to country. Should one person in the US decide how much of the truth someone in Denmark is allowed to read?

    Whether some people like it or not, there is medical information regarding psychedelics and it should not be censored because of one person's personal agenda.

    There is only one person/group doing this and he is not a doctor.

    If he was a doctor, the only agenda he should have is to do no harm. Keeping information from people can harm them.

    Medical marijuana is illegal under federal statutes. Should all references to it be removed from all the pages where information on it helping different medical conditions, be removed? Should it only be made available in states where it is legal?

    There is no legal reason for references to the use of psychedelics to treat cluster headaches, or all of the research on it, be removed. The research itself appears on government websites.

    The medical community has always understood the possible benefits of psychedelics and most have been hampered in advancing research.

    The medical community supports what Clusterbusters does, what we stand for and is looking to help people with cluster headaches.

    Evidence of the support within the medical community for Clusterbusters and the research, education and advocacy work that we do, can be found in the post about the additions to our organization with our Medical Advisory Board.

    'nuff said

    Bob


  8. We are now able to release the announcement that the 2014 conference will be held on September 18 to 21, 2014 (Thursday to Sunday) at The Inn at Opryland in Nashville TN.  (A Gaylord-Marriott Hotel)

    Registration details, hotel links and additional information, including speakers, will follow but we can confirm a room rate of only $99 per night.

    Looking forward to seeing everyone!!

    Bob


  9. In Memoriam

    The cluster headache community, along with his family, friends and all the other communities he touched, was deeply saddened to learn of Andrew SewellÂ’s passing.

       As people age, they often begin to wonder about what type of legacy they will leave. Andrew may not have spent much time wondering due to his young age, however he would be, and his family should be, proud of his legacy within the cluster headache community. He may have been aware of the positive impact he had upon so many individuals he helped personally. He may not have been aware of the life changing affect he had upon tens of thousands of cluster headache sufferers around the world.

       His early work with us and MAPS while at Harvard, with cluster patients and the use of psychedelics as a breakthrough in treatments, lead Andrew to meet with them and understand the significance the condition had upon them. As it relates to this community, his legacy not only includes impacting the lives of those who suffer, but also their families. A positive change for so many that will become generational in nature.

       Following his introduction to this community nearly a dozen years ago, Andrew dedicated a great deal of his time to helping as many people as he was able to reach. Personally helping all that contacted him, building a website to bring information and support to those afflicted, and continuing to advance these treatments through research and education. Andrew knew that this isn’t always the easiest research path, nonetheless he never stopped working for people that suffer from this disabling condition.  He was the lead investigator on a new study that is currently underway with Clusterbusters.

      Andrew became aware of these treatments helping in not only eliminating this dreadful physical pain, but also helping heal the emotional damage that chronic pain such as this causes.

      When a doctor ends a patient’s pain and also heals their psychological damage, he is certainly appreciated and revered. When a doctor is an integral part of doing this for tens of thousands of people, with more to follow even after his passing, he leaves a community incredibly appreciative, stunned, saddened and mourning the loss of a great advocate and friend.

    Bob Wold

    Andrew at some of our conferences

    sewell2_zpsfda83d74.jpg

    Oct25to292007ClusterbusterConferenceAustin028_zpsee8b0740.jpg

    Oct25to292007ClusterbusterConferenceAustin031_zpsd8755a21.jpg

    conf12_zps0118ee68.jpg

    Oct25to292007ClusterbusterConferenceAustin033_zpsb63c0e19.jpg

    sewell1_zpsc0f05ed6.jpg


  10. Thank you Kyle.

    I agree Dan.

    Yes that is the correct address (above) to send cards.

    Short notice as these things always are but, they are having a Celebration of Life get together at the above address on Saturday, 7-27-2013. It starts at 2 PM.

    FYI, he was married in 2011 and his wife's name is Nikki.

    They are looking for any pictures that people may have that they will be putting into a video for display.

    I will be sending what we have from the years of conference appearances and pictures with attendees. People he helped along the way.

    If anyone has any pictures they would like me to send along, send them to me in email so I can pass them along.

    psiloscribe@yahoo.com

    They will be holding more formal services at a later date to be determined and will be help in Ridgefield CT. I will pass that info along when it's available.

    Bob


  11. They are still not sure of the cause of death. he made it through surgery. Awaiting autopsy results.

    They are having an open house this Saturday, the 27th at his home and are planning a memorial at a later date.

    I will get the info on the memorial and an address where people can send cards etc.

    More info as it becomes available.  :(

    Bob


  12. Its with deep regret that I have to inform everyone here about the passing of Dr. Andrew Sewell.

    I don't have a lot of details yet and will follow this up when I have more.

    I will release more info as it becomes available. I have been told that he died during or following surgery due to complications.

    Andrew was with us from the beginning with the early work with psilocybin at Harvard.

    He also did a study with us with LSA that provided a wealth of data and information on the LSA seeds that many people now use for relief.

    He was currently working on another study with us.

    It was during that early work with Clusterbusters and psilocybin that many people became very close with Andrew. I know that many friendships remain and there are thousands of people getting relief today that Andrew was instrumental with his involvement.

    Following Andrew's early involvement he remained committed to helping people with cluster headaches and even opened up a website to help.

    http://www.clusterattack.com/blog/home/

    Bob


  13. There have been a lot of questions regarding this issue as well as several others over the recent past.

    The Board of Directors of Clusterbusters has issued the following statement;

    As a registered nonprofit it is Clusterbusters mission to find relief from cluster headache through research, education, advocacy and support.  In response to the numerous inquires we receive regarding fundraising efforts of other organizations (nonprofit and for profit), we encourage individuals to carefully review all proposals and submit questions directly to those making the solicitation.  Clusterbusters collaborates with institutions, organizations and individuals with like-minded missions, however we do not offer advice, support, or comment on private fundraising efforts.

    Bob


  14. http://www.cod.edu/news-events/news/12_may/13_psychedelicscluster.aspx

    The College of DuPage Human Services program will host "Changing Attitudes Toward Psychedelics in Therapy, Biology and Culture" on Monday, June 17, from 1 to 5 p.m. in the Health and Science Center, Room 1234. This program is free and open to the public.

    This program feature presentations by Tom Roberts, Ph.D., author of Psychedelic Future of the Mind, Bob Wold, founder of Cluster Busters and Bruce Sewick, LCPC, RDDP, CADC, the instructor of "Psychedelic Mindview" a course at College of DuPage.

    The sessions will explore how psychedelics can provide a corrective experience that can facilitate a change in those being treated for addiction and how psychedelics can help patients with Cluster Headaches (also known as "suicide headaches").


  15. I don't want to post the entire report above, but it would be great if someone involved with HOH could write a short-ish summary about what Headache on the Hill is, what it is doing, and how to get involved. I could then post that on the group and perhaps get some more people involved.

    MG

    Moxie, I appreciate your desire to spread the word on this. That is what we are trying to do with our Advocacy work.

    There are about a dozen FB groups for cluster headaches.

    I'm sorry but I dont believe we should edit our work or the reports of our work so that they will conform to the rules of a group that censors what people can be told about clusters, treatments or what we are doing in Advocacy, Education or Research.

    The full report is available to everyone from the official Clusterbusters Facebook page as well as other places.

    There is also a FB page for the Alliance for Headache Disorders Advocacy.

    I am very proud of the work done by Clusterbusters and every cluster headache sufferer and supporter that went to DC and don't think we should have to edit out ANYTHING.

    So if you'd like to post a short description of the report or what the Alliance does and then put a link to the full report, I'd be happy to see it and "share" it.

    At the very least, this might give 822 people some hope in the future.

    MG

    There are larger FB groups for clusters.

    "Cluster headaches" has almost 2500 members.

    We post as much as we can to reach ALL the cluster people out in Facebook land. We try our best to give some hope for a better future to ALL cluster people.

    "Like" us on:

    https://www.facebook.com/#!/clusterbusters

    :-)


  16. The "Cluster Stories" booklet is a work in progress and I am always adding to it.

    It is what we asked people to add to for the HOH trip.

    We are still accepting additions so anyone wanting to get their story written up, please send it to me in email.

    psiloscribe AT yahoo DOT com.

    I know its difficult for many but here is what I would like you to include. its important to keep it concise. We are trying to grab attention with these. its not for people to get compfy and read in bed. We use it in advocacy situations where people can read one or two and WANT to read the rest.

    So......keep it 500 words or less. Focus on how clusters have affected your life. Financially, emotionally, jobs, relationships, suicidal ideation etc.

    These help people organize their thoughts for the HOH trips and also when you are interviewed or questioned.... If you had 3 minutes to state your case for the need for increased research, eduaction etc....

    We know what clusters are....we want ot know what clusters have done to your life!!

    As to the booklets, yes they will be available at the 2013 Clusterbuster Conference in Sept.

    They are not currently available to be read anywhere else. We will put it up on our website when we get it to a stage and format that it will workable.

    Bob


  17. An expanded report and update!

    Psychedelic Science 2013 MAPS

    This conference was attended by Bob Wold, President and Kim Robbins, Trustee.

         

    On April 18th through the 21st, Clusterbusters attended the MAPS conference in Oakland Ca. This conference allowed us an opportunity to accomplish a great deal in all of our missions. Education of the all layers of the medical community, from doctors and nurses to administrators, as well as all others in attendance regarding cluster headaches. Advocacy for increased research funding, improved treatment plans and visibility of a condition that needs more attention from all fronts. Make known not only the need for but the opportunities available for research that will lead to meaningful improvements in the lives of hundreds of thousands of sufferers and their families.

    Among the 1800 people at the Psychedelic Science 2013 MAPS conference we attended were hundreds of MDÂ’s, PhDÂ’s, the very best of the worlds researchers (33 countries represented), University administrators, famed authors and news outlets.

    The Clusterbusters information table was a HUGE success! We were approached throughout the conference with questions, requests for additional information, and handshakes of congratulations for our advocacy and progress in the medical field. Before the end of the conference our table was completely wiped out of brochures (explaining the mechanisms of cluster headaches, the impact upon the lives of the families that live with them, the desperate need for research), printouts, and our very first edition of "Cluster Stories". ("Cluster Stories" is a booklet of first account descriptions from clusterheads who struggle, survive and inspire. These stories touch readerÂ’s hearts and compel them to want to learn more. Thank you to everyone that provided us with their heartfelt personal stories. We understand the difficulty in putting such personal information in writing and appreciate all your contributions. They may be personal stories but they do speak for hundreds of thousands of families living with cluster headaches. Please, keep your stories coming so we can add them to our next edition!)

    All of this in addition to the presentations that focused on cluster headaches & Clusterbuster research made a lasting impact upon attendees. Dr. Torsten Passie presented an update on BOL-148 and educated the attendees on cluster headaches.

    No longer are we a community that is alone, looking for help from within and struggling to get the attention of others. Our voices are being heard! We are being approached by people that can help - coming to us asking what can be done, willing to get involved, and eager to tell others about cluster headaches.

    We had quite the quick turn around from our trip to Washington DC for our participation in the Headache on the Hill event. (Check out the report on our success while there)

    This trip to Oakland though may end up being one of our most successful trips to date. The incredible array of top researchers, Research foundations and top names throughout all areas of the medical community offered a wealth of opportunity to meet people interested in helping people with cluster headaches find better ways to treat the condition as well as live with it while we find better treatments. As those of you that have followed us along the way and/or attended our conferences, we have always looked at the need to treat the family living with clusters and not just the person with the clusters. This is a condition that affects every corner of every home where it exists. For these reasons we have always looked at not only the physical aspects but also the psychological aspects of cluster headaches. The confluence of experts gathered in Oakland this weekend came to us, each offering help in their fields of expertise.

    I can give you some details of some of the discussions that are now underway and at various degrees of progress.

    While in Oakland, work was progressing on a study being done on Clusterbusters and cluster headaches at a major East Coast University. Information has been transmitted to the IRB and the all permissions granted to move this particular study forward.

    We will be in need of people willing to participate with interviews in this study

    Preliminary talks have begun on four additional studies, all as a direct outcome of this conference.

    One in the US, that would be studying cluster headaches, an effective treatment of clusters and the affects of PSTD and clusters.

    Two in the UK :

    Work has begun on collection of data and information for the purpose of possibly setting up a trial of new therapeutic agents.

    Secondly, preliminary discussions are ongoing at a major institution regarding a study with a drug now in development. WeÂ’d be looking for people in the UK for participation in both of these. These do take time to get going but please keep your eye on these if you are in the UK.

    and one in South America:

    This comes from a meeting that Kim and I had with a psychologist from Lima Peru.

    He has proposed a study in Peru with a Neurologist that he works with there. We are in the data collection stage at this point.

    All of these would be studying different areas of cluster headaches and different treatments. As details can be released, we will certainly keep everyone apprised as to the progress.

    We hate to tease with so little information but the researchers, their institutions and the projects themselves need to be protected throughout the process.

    There will be not only an opportunity for people to participate but a need for people to take part in making these studies possible. Please stay tuned. A more full and up to date report will be available at our conference in September.

    The trip has also already produced a couple of radio interviews along with numerous inquiries regarding news articles and stories.

    I was recorded for a radio interview last week and Billy and Becky were interviewed also for the same media outlet. I will let you all know when that is put together and aired. This will end up being more than just an interview. This is a story being put together for airing that talks about clusters, Clusterbusters and all the work weÂ’ve been doing. Not just the research but all the education and advocacy work including Wash DC etc.

    Anyone else in the New York area that might be interested in being interviewed should contact me.

    We have come a long way! Every worthwhile journey takes enormous energy, endurance, and many, many steps. This has been one long relay race that is gaining ground due to the performance of numerous runners.

    Thank you all again for every bit of help - your efforts in speaking out to others, your contributions to our conferences, website, and message boards, and your donations which enable our non-profit to continue. Very importantly, thank you for your confidence that we can and will succeed!

    All of us at Clusterbusters are keenly aware of the responsibility we have to everyone that have had cluster headaches invade their lives and to those that will surely follow. As the medical community, governmental agencies and others that can help us come forward or answer their doors when we come knocking, we take these opportunities very seriously and will continue to do what we can to promote progress. We have grown to a large, vocal group, well respected in the medical community, which is being listened to because of the perseverance of so many people over the years.

    Bob Wold

    5-28-2013

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