The Blog

Report : 2014 Clusterbuster Cluster Headache Conference

Nashville TN. Sept 18-21, 2014

Thursday September 18

As people from several countries and all over the USA began to arrive and settle in to Nashville, we all gathered together for the Presidents Reception on Thursday evening.

It’s called the Presidents reception but in all honesty it’s returning attendees that hold the reception. People that have met before and understand the magnitude of meeting a group of clusterheads for the first time. Many people know each other from past events like this and seeing old friends again resembles the reunions we often see on TV at airports. People coming home from overseas and reuniting with their families. Had TV cameras been there some of the reunions would now be trending on You Tube and Twitter.

Even more emotional for many is meeting new arrivals that have never met another cluster headache sufferer in person for the first time in their lifetime.

As an organizer things are certainly hectic on top of seeing old friends again myself but I am able to sit back a bit and people watch. It’s an incredible sight sometimes to see someone that obviously has felt isolated and alone for years, walk into a room that seems full of relatives that they didn’t knew existed. Imagine walking into a room and seeing 100 brothers and sisters that you never knew existed. That is happening all around the room and is something to marvel and this alone makes all the work putting these people together, all worth it.

One of the best parts of these gatherings is watching those that are returning for another conference actually seeking out the new people so that they can be a part of the experience of meeting a first timer. It is something that neither will forget no matter which side of the handshake/hug they are on.

Friday September 19th

This is a very long report. A lot was going on throughout the next couple of days.

It was all very important but in the following report, you will hear about the following:

  1. Clusterbusters research projects:
    1. Upcoming Genetic Study
    2. Medication study results
    3. Psilocybin Study
    4. Bromo-LSD
  2. Big Pharma attends for an education
  3. Advocacy progresses
  4. A lot of inspiration, education, treatment advances & hope in the future

Registration had started on Thursday evening so when registration opened back up at 8am on Friday, many people were already wearing their name tags and walking in with their welcome bags. Working thru registration people were getting their tee shirts, other give aways and all their paperwork for the weekend. Eveyone meeting new and old friends again and this time sharing a cup of coffee.

I have to thank our registration staff here for doing an incredible job. Welcoming everyone and getting them all settled in and informed on the weekends happenings. Our two main staffers Giselle Diaz and Morgan Borrego with help from Bob Bowling, MJ Markins & Mary Wold. It’s not easy with 150 people milling around looking for their next cup of coffee.

 

Mr. Lee Markins

Event Coordinator, Host and MC Lee Markins opened the 2014 Clusterbuster conference with the announcement that those in the room were part of and witness to the largest gathering of cluster headache sufferers and their supporters, in history, to date.

Thank you Lee for all the preparation and organizing and keeping this conference running so smoothly. With Doug Wright’s assistance, putting this together is a massive task. Very well done Lee and Doug and thanks also to Lee’s wife and first class, first rate assistant MJ. Wonderful job by all.

2nd up was Bob Wold, President & Founder of Clusterbusters.

The opening presentation started with a bit of history, explained where we are at presently as an organization and a peek into the future.

Clusterbusters went from a message board idea to a registered 501 © (3) in 2002. Our mission in forming was to initiate research for cluster headaches, educate the public and medical field about clusters & to advocate for those that suffered from this condition. The paucity of research into cluster headaches has always been a problem in finding reliable, safe and effective treatments. We hoped that bringing a strong voice from the patient community would help push research ahead. Our initial area of interest was to study the effectiveness of psilocybin. A psychedelic that had been around as a headache treatment for thousands of years but currently was a scheduled drug and unavailable as a prescription medication,

Our work in this area resulted in an approval to move forward with the first psychedelic study at Harvard in over 40 years. Our first published work to come from this was a case series on psilocybin & LSD, published in the peer reviewed medical journal Neurology in 2006.

Following this first publication, Clusterbusters has grown a great deal and accomplished much in the areas of research, education and advocacy.

Continuing, current and future projects were discussed. Several major announcements were also made.

Clusterbusters Patient Registry is growing larger and will be a valuable tool moving forward with some exciting new projects. If you haven’t already registered, please do so as soon as possible. You can also print out hard copies from the online form and send them to people you may know that aren’t online, and mail them in to our offices.

Clusterbusters was hosting 3 medical companies that were helping sponsor our conference and also to report upon their products and research studies to treat cluster headaches.

Clusterbusters has always attempted to educate the medical field on what is needed by the patients and also educate their members on what is new on the market (or growing in a field) that might offer better treatments and more relief. These three sponsors, as discussed later in this report, all help to expand areas of research and understanding of cluster headaches. We all thank them for their participation and contributions.

Our study on genetics & clusters is getting close to accepting patients. We announced at this conference that we would be most likely starting to accept participants in the first quarter of 2015. This study is a collaboration between Clusterbusters, Dr. Robert Shapiro of the Vermont Medical School and McGill University in Montreal Canada.

The geneticist we are working with is one of the leading geneticists in the world and more details will follow shortly. Participants for this important study will be chosen from our Patient Registry. General inclusion/exclusion information will be available shortly.

A brief discussion on genetics and epigenetics ensued and how this area of research may be the path to a cure for cluster headaches. This study and those that will participate will be the foundation of future studies that could eventually lead to a cure.

Speaking of Dr. Shapiro, the announcement of the addition of three new members to the Clusterbusters Medical Advisory Board was made. Three of the finest headache specialists in the US agreed to sit on our Medical Advisory Board. Dr. Robert Shapiro of Vermont, Dr. William Young of Philadelphia and the Jefferson Headache Clinic and Dr. Brian McGeeney of the Boston University School of Medicine.

Clusterbusters is proud of our association with these fine doctors and thankful for their dedication to helping families that suffer from Cluster Headaches.

Also, our association with Dr. Larry Schor of West Georgia University and Dr. John Halpern of Harvard Medical School continues with their positions on our Psychological Advisory Board. Everyone understands that cluster headaches are not just a physical ailment but also include a huge psychological burden upon not only the sufferer but the entire family. We work on research and education in both areas and look to advance the treatments and ease the suffering. Our work throughout the year addresses these areas and our conference also takes a look at all of these issues.

Coming up are presentations that will bring you up to date on the progress we’ve made in our advocacy work, (Headache on the Hill missions) several new or ongoing research projects including psilocybin & BOL, new products that are in study or available now, and many great speakers to help people with clusters live life to the fullest.

 

Mr. John Bebee

John Bebee, one of our star advocates spoke of the experiences for himself and others in Washington DC. What drives all advocates to make the decision to speak up for others and walk the halls of congress, Whet everyone seems to come away with on these trips is a feeling of empowerment. To be able to speak for yourself and for others and talk with people that can make a difference. It is a feeling that is difficult to describe sometimes but to become part of the discussions and make your thoughts known, to let people hear what they need to hear, is one of satisfaction. Whatever decisions may be made, it is important and fulfilling to be a part of the discussion and not just sit back and be told what those decisions will be. You can be part of the decision making process and speak for those that can not be there.

Thank you John for making a difference in everyone’s lives.

More on advocacy later.

 

Pharma Focus Group

During the conference, there was a team of representatives from a large pharmaceutical company in attendance. They stayed throughout the entire conference, learning about what life is like living with cluster headaches, where we stand on treatments and to learn from the cluster patient/supporter community. To not only learn the scientific details but learn and understand the human side of the condition.

During the conference, this company held a focus group meeting with a representative group of sufferers and supporters. Episodics and chronics, men and women. I want to thank the group that participated in this meeting. I believe it helped build a truthful and powerful foundation for future research directions and educating the “system” to the truth about cluster headaches.
This meeting was not about finding what the next hand-me-down drug will be but instead, understanding the condition from those that know it best, the sufferers themselves.
I want to thank the representatives from Eli Lilly for their honest and genuine care and respect shown to everyone and their commitment learn about our disease and not only allow our input but desire our input and understand value it’s importance.

Dr, Brian Mcgeeney

Next on our agenda was our keynote speaker Dr. Brian Mcgeeney. Brian held sessions both before and after lunch. He is understandably considered a hero among the group as he is, in my opinion and that of others, the most dedicated doctor we have working in the cluyster community. His wealth of information and knowledge of the condition, treatments and emerging research requires both sessions. Brian not only covers all the basics but his interactive sessions invites and answers all those questions that both sufferers and supporters have regarding cluster headaches. Explaining the facts, dispelling misinformation and myths and offering a full toolbox of options for people.

Most people walk away from his presentations having a better understanding and more knowledge about cluster headaches than the doctors they will be returning home to see.
Thank you Brian.

 

Ms. Michele Harris – Ausanil

Michele presented the scientific information on VR1’s nasal spray Ausanil. Giving a background on it’s development and methods of action. There have been some very good results reported by sufferers and they are interested in learning how well it works for clusters and determining it’s usefulness it treatments. She offered free samples to everyone that was willing to give it a try and report back as to the results.
Over the years many people have tried different versions of this sort of spray with mixed results. We look forward to results on this study and thank all those that are taking part in testing out the product.

Thanks to everyone at VR1 for spending the weekend with us, sponsoring this conference and advancing research into cluster headaches.

 

Dr. Larry Schor

Larry is another of our well respected and popular speakers, touching on all the psychological aspects of living with cluster headaches. Issues that touch the sufferer and their support systems. Issues that so many of us think about and live with but oftentimes are either afraid to discuss or not have anyone to talk to about. His interactive sessions allow people to examine these issues and understand that so many of us also deal with day in and day out.

Dr. Schor also held a “safe room” session after hours where everyone was invited to attend and talk about their struggles and how others deal with similar issues. It is one thing to discuss some of these things on a message board or even with another sufferer or fellow supporter over a cup of coffee. It’s something altogether more profound to sit in a room full of people willing to listen and understand and share. Dr. Schor’s sessions, both on the conference floor and the safe room are always highlights of the conference for people. This year was no exception.

 

Mr. Dan Ervin

“Hollywood as Dan is affectionately known, presented his NatGeo documentary and followed with his story, both humorous and inspirational. Dan brough his co-star family with him and connected with everyone on what it takes to survive and thrive and has taught so many people available treatments and how a family can work together to overcome some of the hurdles we all live with.

 

John Bebee

The days sessions closed with a hands on demonstration on the proper use of oxygen and answering questions on everything from hardware to instructions on it’s use for best results. John’s entertaining and informative demonstration was well attended many people attending were able to learn ways to get better results.

 

Friday and Saturday night’s activities ranged from people getting out and enjoying Nashville and the company of fiends nw and old, to numerous meetings between all the speakers and doctors and professionals there. Collaborating and setting the future in motion. Great headway was made on several fronts including new research projects, advocay alliances and educational programs. Exceptional progress has already been made since then regarding some of these new alliances and there will be more exciting news to report very soon.

 

Our second day of presentations started off with a wonderful presentation from author Jim Fadamin.

 

Jim gave an educational presentation regarding the true safety of psychedelics and their long history of use as a therapeutic tool. Following Jim’s entertaining and enlightening presentation, he very kindly auctioned off 10 of hisbooks and autographed each one.

Jim will also be following up with all in attendance as well as everyone on our mailing list regarding a joint venture research project with himself and Clusterbusters.

 

Jonathan Stahler

Jonathan is a cluster sufferer and the legislative aide to Senator Coons of Delaware. Jonathan was instrumental is helping Clusterbusters and The Alliance for Headache Disorders Advocacy get the letter of support from 15 Senators to the SSA with regard to oxygen as a covered treatment for cluster headaches. He continues to work for us in DC and is closely involved in our work on “The Hill”

Jonathan spoke of the process of working with congress and what we can all do to help the cause. How to approach your representatives and how to best follow up to get results.

Thank you Jonathan for all your work and helping us achieve the progress we have and will have in the future.

We will again be working with Jonathan when we return to DC for the headache on the Hill event in April or 2015.

 

Dr. Anne Calhoun & Mr. Timothy

Dr. Calhoun, a leading specialist in our field and representative of ATI (Autonomic Technologies) and another one of our sponsors, presented the results of their clinical trials in Europe and discussed the upcoming study in the US. This minimally invasive surgical implant showed good results in the European studies and looks like a promising alternative for people to investigate. We will await US study results and keep everyone informed as to it’s effectiveness and safety.

Mr. White traveled from Germany to talk to us about his experience leading up to and the implantation of his own device to treat his cluster headaches. It was good to hear directly from someone involved in the study and to learn of his experience and success with the device.

We will be following up on providing more information on this study.

 

Emmanuelle Schindler

Emmanuelle of Yale University reported on the results of the soon to be published Medication Use Survey that was carried out with herself and her staff, Clusterbusters and Dr. Robert Shapiro. This was culmination of the work started by Dr. Andrew Sewell and Clusterbusters. Comparissons of all the usual medications and therapies used by cluster patients and their true effectiveness. As we all know, the success rates that come out of some clinical studies do not always match with what takes place in the real world. The publication of these results will help educate the medical community to what is really working, including new statistics on the effectiveness of oxygen. There is still a long way to go in getting the word out there on what works, especially oxygen prescribed properly and all of this data will help advertise the truth behind treatments.

Emmanuelle also announced the resumption of our work on psilocybin and cluster headaches with clinical trials. More will be announced shortly but we are looking for a study to begin shortly. We will be keeping everyone on our patient registry up to date on the timing and structure of this study.

 

Mr. Steven Hurst

Mr. Hurst is the President and CEO of Savant Corporation and spoke of the development of Bromo-LSD (BOL) as a treatment for cluster headaches.

BOL is moving forward and is back on track for clinical studies. There is a lot of work that needs to take place before there are human studies and people are being given BOL to treat their clusters in a clinical setting. Again there will be more information coming soon and the future steps will be laid out for everyone.

Clusterbusters is very much involved in doing everything we can in making sure that this research is carried out and moved forward.

 

Justyna Blake

Justyna represented ElectroCore and announced the study findings of their Gamma Core device in Europe. Results were very encouraging and for those people that reported its effectiveness, it appeard that this effectiveness continued long term.

She spoke of the US study and that the results from this study will be reported in the near future.

This was the second year that Electrocore sponsored our conference and spent important time at our conferences speaking with and learning from cluster patients. Their work involving the vagus nerve’s involvement in clusters expands the scope of research and adds important data and information to the overall search foe improved treatments and understanding.

 

Lisa Hertz

As our conference began to wind down to a conclusion,, Lisa presented her inspirational story of the struggle involved and her story of overcoming and success.

Lisa was struck with clusters while in college in a devastating way that forced her out of school and out of her love of competitive swimming. Through her tough determination and with the help of her parents, she was able to not only put her life back together and succeed but to achieve her goals. Not only did she get back and graduate but is now teaching school and has moved from swimming pools to competitively swimming long distance ocean races.

As more and more young people find us and are in need of inspiration and examples of leading a happy and successful life, Lisa provided herself as a perfect example of determination and success.

 

Alexis Williams

There is a method to our madness and we wanted to close out the conference with a tribute to those people that are there to support us through allof our cluster trials and tribulations. For those of us lucky enough to have unconditional support at home, Alexis gave a heartfelt and well deserved tribute to those that we rely upon to keep us going day to day.

We can offer information and the medical community can offer treatments for the condition but it is the supporter that treats our hearts and souls. Alexis gave this most important “treatment” a voice and ended with thanking the most important people in our lives.

 

In closing…
Time constraints caused me to keep my thank you’s to a minimum. In addition to all those I have thanked above, let me add the following.

Clusterbusters can provide the forum for these conferences and the speakers, spread the knowledge and educate those in attendance but it is always the attendees that make this conference what it is. Everyone attending adds to the experience and provides the family atmosphere. Everyone always reports that the most important thing they get out of these gatherings is the friendships that are formed, the understanding that goes unstated but palpable. So to all in attendance and to all those that helped support this conference from afar, with donations and lending a hand in numerous ways, thank you very much.

 

There are a few other people I would like to thank.

I would like to thank my Board of Directors for an incredible year. Our progress seems to have reached exponential proportions. Thank you, Dan Bemowski, Lee Hart and Kim Robbins.

There are many involved in putting these conferences together but special thanks to Lee and Mary Jane Markins, Doug Wright, Denise Loveland-Bowe & Matt Regan for all the work in the trenches.

While the conferences go on, we rely upon a number of people to help with work both in front of and behind the scenes. I want to particularly thank Steve and Heather Keschinger, Todd Pittard, Ruthie Harper, Breanna Hamm, Jon Strunk, Phil Wold and our photographers Ashley Hattle and Jeffrey Rowland. Thanks to Mollie markins for filming the entire program and working on the documentary.

Thanks to Cindy Reynolds for all your work this year leading up to the conference and with all of our advocacy work.

One of the reasons we are able to offer a conference of this sort at as reasonable cost as possible is due to the generous donations of both cash and auction items from so many people. There are a few I would like to single out but that in no way is to minimize the importance and appreciation of each and every donation.

I would like to thank Pat Mitchell, Denise Loveland-Bowe, The Little River Band, Scott and Denise Struhs, Jim Fadamin, Joanna Kempner, Dan Pace, Christy Spreco, DJ of ch.com, & Donna Gurin Harlacz.

I am sure I am but hope I am not forgetting anyone. There are dozens of other people that donated and contributed in many ways and each one is important to the whole of the conference. No matter how much the items brought, we are quite confident that no one walked away with any extra cash in their pockets they could have parted with. As Ki-Ki stated people were bidding with their hearts and not their wallets. Thank you all that donated items and supported the cause by bidding.

 

Lastly, we understand that we are sometimes misrepresented as to who we (Clusterbusters) are, what we do and who works with us.
We usually try to let our work speak for itself but at times I feel that it’s necessary for me to ask that all the people that have worked for years as volunteers building Clusterbusters into what it truly is be recognized and respected for their hard work. Work that is done to support and improve the lives of their cluster brothers and sisters. Hundreds of people have put in tens of thousands of hours and tens of thousands of their own dollars for no reason other than to help others. We are certainly not alone on what we have done or accomplished in the last 12 years but the people that have contributed to what we have been able to get done are some of the finest people I have and will ever meet.

We have gone from a time where people would not come out of their own homes when in cycle and hiding from their own families, to a time where people arew willing to put their faces and stories on national TV. Have gone from not wanting to tell their siblings about how they suffer and need help for themselves to talking to their congressmen and telling them they need help for themselves and others.
Just as we ask people to ask someone that has attended a conference to explain what it’s all about, and not rely upon others that only see us from a distance, I would also ask you to speak directly to those that sat in on the focus group to explain what that was all about.

We not only work with all levels of congress and governmental agencies that concern us as a patient group, but we get results.

We not only work with the medical community but we are deeply involved in research studies involving emerging medications, FDA approved medical devices, groundbreaking research into genetics, pharmaceuticals & “natural” products/options.

Not only will “big pharma” talk with us but they will attend our conferences to listen to our complaints/concerns and listen to our pleas for help.

Do you know all those things that you think that you’d love to say to big pharma if you had the chance? I can assure you that an amazing group of sufferers had that chance to speak to them and let them know what they and you think.

If you aren’t sure if you should attend a conference or not sure if there is anything for you, please ask someone that has been to one. If you have the perfect treatment plan that works well for you, ask anyone that has been to one if there is still anything to learn or be a part of helping others or your family.

 

Thank you everyone for your support.

 

Bob Wold

President, Clusterbusters, Inc.

 

 

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