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2013 Psychedelic Science Conference - Oakland, CA

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Hi all!  This was an amazing conference Bob and I attended last week.  I've posted some pics and info on our FB page already, but also wanted to copy some here also for those who do not use FB. 

2013 Psychedelic Science Conference

Among the 1800 people at the Psychedelic Science 2013 MAPS conference we just attended in Oakland were hundreds of MD;s, PHD;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 sucess! To our surprise, we were approached numerous times 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 familes that live with them, the desparate need for research), printiouts, 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 readers hearts and compel them to want to learn more. 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 to attendees.

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 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!

th_P1050646.jpg

Take a guess at who the man in the middle is???

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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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Thanks Bob & Kim!

It's nice to read the 'cluster stories' are being shared and are making a difference.  Sounds like the debut distribution went to the perfect audience.  I can only imagine what it would be like to be correctly & empathically perceived (as a patient group) by the entire world as you share we were by this sampling of caring people. 

Also, thanks to Billy & Becky.  You 2 amaze me with your steady contributions to the CH patient group.  I've got to believe in the following quote (and I have no idea who said it, I only know it was a WWII commanding officer)

"With these troops, on this day, with this armament, in this theater, I can win this war."

Much appreciation to Clusterbusters!

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Thank you for posting this to the FaceBook page. I am a member of another cluster headache group on FaceBook, and reposted the information and directions on how to find us here. Between FaceBook and Twitter, I come across so many people who are suffering and have no hope.

Hope has just entered the room.

Thank you Bob and Kim, and everyone, for all your hard work.

MG

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These are great days to be living in.

Much better than the old days, when politicians wouldnÂ’t listen to us, when there was no financial investment to be had, when medical institutions were unwilling to take on such sensitive issues, when doctors couldnÂ’t approach our subject for fear of their jobs and reputations.

Truly, great days.

Well done Bob, well done team.

Congatulations everyone.

shocked

"Now this is not the end. It is not even the beginning of the end. but it is, perhaps, the end of the beginning." Sir Winston Churchill.

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The cluster stories, are they the reason you wanted us to give you a write up about our experience at HOH Bob?  Just wondering, cause my story is kinda rather mixed in with a bunch of other stuff in the email I sent to you LOL.

Is there no where online they can be read?  And do you still have the old compilation of cluster stories Bob?  The ones you and TommyD et al did up for the 2003 OUCH convention?  I've got a copy of both the stories (posts really from ch.com) and the evidence compilation as well.  Wondering if I should take the many items I have and start a CB Museum of Progress hehe

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"Now this is not the end. It is not even the beginning of the end. but it is, perhaps, the end of the beginning." Sir Winston Churchill.

I like, I like!

CB Museum of Progress

Oh you know I'd buy an entry ticket! 

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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

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The Use of LSD, Psilocybin, and Bromo-LSD for the Treatment of Cluster Headaches

Torsten Passie, MD

In 1996, it was reported for the first time that psilocybin may provide relief from relentless pain resulting from cluster headaches. Chronic, severe cluster headaches are also referred to as "suicide headaches" since many patients are not able to cope with the severity of this painful condition. Information exchanged on the Internet between cluster headaches sufferers began to indicate that many were self-treating with hallucinogens. A systematic survey by researchers at Harvard Medical School also revealed that psilocybin and LSD may have preventative effects resulting in symptom-free periods lasting for weeks or months after taking the drug just two to five times. This lecture will provide an overview of the history and results obtained from studying the use of psilocybin and LSD within the context of cluster headache self-treatment. In addition, the most recent results from new trials with Bromo-LSD (BOL-148) will be presented along with an outline of the potential development of BOL-148 as a medicine for the treatment of cluster headaches.

shocked

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