Psiloscribe

You can try this link to the event page http://tinyurl.com/m4l6ybl Bob

I'm starting this post here in the general forum so that everyone can be sure to not overlook this announcement. You're hearing this here first. We're celebrating our 10th anniversary Clusterbuster Conference this year. This message board and the people in it have been the life blood of our organization and has always been an integral part of all of our accomplishments and have helped thousands of people worldwide live a better life. Thank you all for your dedication to helping others. See the announcement below in Advocacy, Events and Conferences. Please try to keep conference questions in the other thread so we can make sure not to miss any. Much more info to follow!!! Bob

10th Annual Cluster Headache Conference 2015 Chicago, Illinois Clusterbusters is pleased to announce the dates and venue for the 2015 Conference. Dates:        Thursday September 17, 2015 to Sunday September 20, 2015 Location:    The Hyatt Regency O’Hare  9300 Bryn Mawr Ave, Rosemont, IL 60018 This is one conference you will not want to miss! This conference offers an opportunity for understanding and camaraderie that attendees have greatly appreciated in the past. There will also be updates and reports on advocacy efforts, education, and the latest information on current research. Rooms and Rates: We have arranged a block of rooms starting at $125 per night.  Make your reservations online at: [ftp]https://resweb.passkey.com/go/cbannual15[/ftp]  You WILL want to make your reservations early. Registration: For Online Conference Registration follow this link: Coming Soon. We have been able to keep the Registration Fee the same at $125 for attendees and $95 for spouse/companions. Schedule of Events: The 10th Annual Conference will start with Registration and the President’s Reception at 6pm on Thursday Sept 17, 2015. The speakers and presentations will follow beginning at 9am on Friday and continue to Saturday at 5pm. Sunday is left open for socializing and final goodbyes. We are still working on the agenda, a compete list of speakers, and more. These will be announced shortly. A few of the speakers already confirmed are: Dr. Brian McGeeney Dr. Robert Shapiro Dr. Larry Schor A lot more details to come very soon. Hope to see a lot of you in Chicago! Bob

Thanks Shocked, you're the man!! And thanks to CH Father for the synopsis. Yes all of this genetic work will lead to our best chance at a cure and it all seems to be picking up speed and more work around clusters. Good stuff Bob

Site locations including any additional countries that will have study sites will hopefully be announced later this month. You'll hear it here first. Thanks go out to everyone that has contributed and supported Clusterbusters. Bob

Yes it is big news. Thanks for moving it to the general board also. Bob

Thank you all for your continued support. I can not release any more information at this time but rest assured that it is very big news. Bob

Hello Everyone, As some of you may know from our conference last year, Clusterbusters has been in close dialogue with Eli Lilly and Company regarding the following release. Among our priorities, has been to provide them with what we felt was important input from the patient community. We are very pleased to be involved in this and will be providing additional information to our membership as it becomes available. Eli Lilly and Company has informed Clusterbusters that the company plans to start a research program for episodic and chronic cluster headache. Lilly is excited to start this program and work with Clusterbusters to actively help enroll patients. The company will provide more information, including the locations of participating study sites, to Clusterbusters and on the web at www.clinicaltrials.gov (expected in late March). Lilly expects the program to begin actively enrolling in late April. At this time, please do not make any changes to your current medical treatment or otherwise to try to qualify for this study. HereÂ’s some additional information about Lilly from the companyÂ’s website: Lilly is a global healthcare leader that unites caring with discovery to make life better for people around the world. We were founded more than a century ago by a man committed to creating high-quality medicines that meet real needs, and today we remain true to that mission in all our work. Across the globe, Lilly employees work to discover and bring life-changing medicines to those who need them, improve the understanding and management of disease, and give back to communities through philanthropy and volunteerism. To learn more about Lilly, please visit us at www.lilly.com and http://newsroom.lilly.com/social-channels Bob

I haven't heard any updates on Ralph's (from Ralphsters spores) but know he isn't in business anymore. If anyone ever hears anything about him please let me know. In the meantime, I need a few names of reliable sources for spores and other supplies such as Skullcap. I want to contact them about a few things including if they'd like to participate in our conference coming up in September. The general board probably isn't the best place to be discussing all this but I wanted to get to everyone so please just send me a PM if you can help out with some info. Or just send me an email at psiloscribe@yahoo.com I've also had a very difficult time finding the old you tube video (set of 4 or 5) about growing that I used to like the best. It was by "RoadKill" Anyone have a link? Or suggest a new set to use as one to help people out the best. One that handles the basics of the PF Tek. Thanks very much for any help. Bob

No this is not the BIG news that we expect to release soon but it'll be the start of a string of interesting work that will be shared. I have spoken with these gentlemen several times and they seem genuinely interested in developing something that could be beneficial to people with clusters. They are looking for about 10 people to take part in this. If you want more info before contacting them you can send me a message and I can share a little more than what can be posted publicly. A North American health care company is developing a new (improved)treatment for Cluster Headaches. The Company is currently doing market research and is requesting a 1 hour phone interview. Your input will help in bringing new treatments to the market for Cluster Headache suffers. If you are open to being interviewed please email ClusterHeadAcheResearch@yahoo.com and provide answers to the following questions. Only those selected for an interview will be contacted: • Do you live in North America – Y/N - ___________ • Are you available for 1 hour phone call – Y / N - __________ • How do you treat your Cluster Headaches Today -____________ • Please provide your email address - ___________________ • Please provide your phone number - ________________________________ • Do you work for a market research company, an advertising agency or a health care company – Y/N - ____________ • Do you suffer from episodic or chronic cluster headaches -_____________ Sincerely, Jon and Glenn

Yes, good point. This is something that we have been wanting to put together for here and the website. If there is anyone that would like to volunteer to work with our Documents Committee to pull it all together, write to me at rwold350@comcast.net Bob

Dear HOHers, This year’s Headache on the Hill will be held in conjunction with the American Academy of Neurology annual meeting in Washington, DC. House and Senate visits will be on Thursday, April 23rd , and preparatory meeting on Wednesday, April the 22nd. This year sign-up will be different than in the past. Simply email Shirley Kessel happyislander@comcast.net , who will be assisting us in the arrangements, and she will send you the application form. She will also give you hotel information. Please note that like last year the AHDA will not be reimbursing for travel. They will be reimbursing non-neurologists $200 for their hotel room. We have been allowed to reserve a small number of rooms by the Academy – so first come first serve for rooms where the meetings will be held! If these rooms are taken, and only more expensive ones are available, unfortunately they will still only cover $200. We are also working on securing additional rooms at a nearby hotel where we may all be able to reserve rooms and is only a short distance from the convention center/meetings as well as close to the Capital. We will announce this info as soon as possible. Here is what we know about the program so far. We will meet in the evening at the Convention Center at 4PM. You will be given passes to get into the meeting room. We will be given our visit schedule at the end of the meeting, and then meet for photographs in front of Congress at 8AM on the 23rd before going off to Congress Clusterbusters will be awarding five (5) travel scholarships in the amount of $250.00 to those most in need of help getting to DC. These will be awarded based upon need and preference will be given to those residing in states that might not otherwise have representation. One of the most important factors in getting results is to make our presence known in as many offices as possible. For consideration for one of these travel scholarships, please write me at psiloscribe@yahoo.com and I will send you an application. Thank you again to our membership for all your advocacy work in the past. I look forward to seeing you in Washington and to having a great HOH. I will be posting additional information as it becomes available. Bob Wold President Clusterbusters

We have some exciting stuff going on this year and I want to be able to expand our reach as far and wide as possible. Our patient registry is going to be very important to our work and cluster research in general going forward. The registry can not be changed in any way and all data must be collected into this one registry. One problem is for people that don't speak English being able to not only find but to understand and complete the registry. We have a German translation that will be available to help our German family members to complete the registry. If there is anyone here that can help us add more translations it would be greatly appreciated. I know we have some French, Dutch, Finnish and many other members from around the world. Help us spread this important registry to your fellow countrymen and women. if you can help, please post here that you will help out as well as sending me a PM so we can work together on this. The registry is located at: http://tinyurl.com/n9ou73a Thanks very much for your help. A translation will help add to the worldwide face of clusters and gather important epidemiological information and just may save someone's life down the road. Bob

Thank you all very much. Polling is closed. More info to follow soon. Bob

I need everyone's help please. If you haven't already answered this on Facebook: I need the answer to the following question and not to be rude, but, I don't need a lot of reasons why or questions, so we can keep on topic. We can discuss later. I promise. For now; If you had to fill out a short diary about your cluster activity, over the previous 24 hours, every day, for a couple of months, would you prefer to complete it every day between: A. 7:00-9:00am B. 12:00-2:00pm C: 6:00-8:00pm Thank you all and please share with your friends and enemies alike ;-) . Bob Wold

Thank you all again. Here is to a kick ass 2015 !!! You heard it all here first. ;-) Clusterbusters The Year in Review and a Look Forward 2014 was a year during which we made great strides in our missions to bring awareness, educate sufferers & the medical community as well as various political agencies that can help us bring about improved treatments and understanding of cluster headaches. The research projects that we have been working on for years all made giant leaps forward and we find ourselves on the cusp of major breakthroughs. All of the following advancements and success stories are a tribute to all the people that have supported Clusterbusters, not only this year but those that have been working hard since 2002. I want to thank all of those that have stood tall and remained dedicated to doing everything they can for one purpose only, helping others. Advocacy & Education: These objectives are worked upon every day of the year by many people. Social media and our ability to reach out to others that suffer has continued to grow and we have been able to reach out to many people that had thought for years that they were fighting their battles alone. Message Board: A lot of research and education takes place on our message board http://clusterbusters.clusterheadaches.com/ as well as discussions on various treatments. We will be making some sweeping changes and updates on the board this year and it will be even more beneficial to all of our members there. Headache on the Hill The first large scale advocacy effort of the year was our attendance at Headache on the Hill in Washington DC in February. Our work with the Alliance for Headache Disorder Advocacy continued to build upon our previous work in DC and although frustrating at times, our steadfast work is showing signs of making large strides for people suffering with all forms of headache disorders. Our determination has always been to knock on as many doors as possible and keep knocking until we are heard is paying the dividends. The numbers of cluster advocates that come together in DC each year continues to grow and the government officials that are in positions to help us know that not only are we not going away, but our voice is getting larger and louder. We have made some headway in our fight for oxygen coverage from the SSA and continue that fight. The fact that these discussions continue and have not been flatly denied as had been the case in the past is a testament to the extraordinary group of advocates that is involved. Working with the top professionals in the medical field, politicians that have stepped up and have joined us and all the individual patient advocates are being listened to more than ever in the past. We have many issues that we will continue to advocate for this year and appreciate anyone that wants to join us in this fight. This yearÂ’s Headache on the Hill event is April 22nd-23rd and we will be updating everyone on how to take part in this event shortly. Talk with anyone that has attended our event in DC and they will tell you how empowering it is to those attending and how important it is in advocating for all of us. This event offers the opportunity to speak up and make a difference for every cluster sufferer and every family that is touched with headache conditions. Advocacy and Publicity: We have been able to make great improvements in our website and it is the source for important information for all sufferers and keep everyone up to date on our work. Our Social Media footprint has grown and we have been able to reach a much larger audience. Our open source policy on spreading information has been essential in allowing people to learn the facts of what is available to them and let them make up their own minds on what is best for them. We have been able to make several appearances on TV and reach large portions on the general population. There was an international news piece that appeared while we were in DC in February that generated a great deal of publicity and awareness. Through our public relations firm that donates all their time and energy to us and a lot of individuals making contacts, weÂ’ve appeared not only on many TV stations but numerous radio broadcasts and many newspaper/website articles this year. There also have been several very successful fundraising efforts and our trip to DC and the conference in Nashville received quite a lot of coverage. All of this additional publicity has helped cluster headaches reach a greater audience and has caused us to handle more inquires than ever before. All of these improvements have helped us get the word out to more levels of the medical community as well as reaching more cluster sufferers. I look forward to all of this adding up to Clusterbusters growing again this year in many ways. We will be looking to add more volunteers and will be hoping for increased donations to help us continue to grow. It is a sign of a healthy organization to continue to grow and have a louder voice 12 years after itÂ’s formation. Thank you to all of those that have helped us grow and continue to help spread awareness and increase our research efforts. Research: 2014 was a banner year in our mission of increased research efforts and positive movement has been seen in many areas. As was discussed in our Nashville conference report, https://clusterbusters.org/report-2014-conference/ We have several projects in the works and all of it adds excitement to our work and shows the medical communities approval of our work, our missions and our determination to move cluster headache research forward. More progress has been made over a larger spectrum of research, than ever before. We are currently, actively involved in more cluster research projects than I believe have ever been underway in history. Our patient registry http://tinyurl.com/n9ou73a will be instrumental in helping all of these projects move forward. Because of the rarity of clusters and the difficulty the medical community has always had in the past with finding enough patients to fill large studies, filling studies has been a problem for research institutions. This is no longer a problem because of the Clusterbuster patient registry. It is also instrumental in making the point that not only are there a lot of us out there, but there are a lot of us that want to help move research forward. Our common voice in demanding to be heard is loud and clear and people are taking notice. EveryoneÂ’s participation in the registry is essential to future research as even if you donÂ’t participate in a study, the demographics and epidemiology data that it provides is very important. As you will see in the research below, we are directly involved in research that will effect everyone with clusters, no matter what treatment you may find effective. Your information is vital to research and will help all cluster sufferers for years to come. Please sign up if you havenÂ’t yet and please share the link if you have. Confidentiality agreements are in place but I will share what I can on our research projects. BOL-148 as we reported at the conference, a new drug development company was looking to move this research forward. There has been a lot of advancement on this and itÂ’s moving forward. This is one of our international efforts and the team is growing and all the pieces are being put into place. Look for 2015 as the year that we make great strides on BOL-148 Psilocybin: This clinical study is being put together and in the process of final approvals. The research institution is in place as is a federal agency that is on board and working with us. The initial funding has been secured and the only thing between us and clinical study of cluster patients and psilocybin is paperwork. We believe we have the team together that will carry this research forward very soon. Genetics: This study is the closest to patient recruitment and we expect to be starting that phase the first quarter of 2015. We are equal partners in this with a renowned institution in Canada and well known headache specialist and one of the worlds leading geneticist. Big Pharma: Clusterbusters hosted a focus group meeting at the 2014 conference in Nashville. Due to the efforts of Clusterbusters and in large part to those people that participated in this focus group, there has been positive movement forward. The progress and direction of this project is based upon cluster headache sufferers telling the industry what we need and what we want in a treatment and not the usual hand me down medication from other disorders. The establishment has heard us and is working with us to research treatments specific to cluster headaches. There is a scheduled meeting this month move this groundbreaking project forward. Medication Use Survey: Followup: This survey and itÂ’s results, which was a collaboration between Clusterbusters and researchers at Yale University, was Presented at the 2014 American Headache Society annual meeting in LA and was the topic of conversation between many of the countries top headache specialists. Our results that looked at everything from prescription medications to psilocybin detailed the true efficacy of many of the medications that are in use for clusters. The percentages of effectiveness that are reported by pharmaceutical companies following their clinical studies do not always carry forward to real life. As we all know, many medications that seem to work in the beginning, fail to offer sustained relief. This study shows some of these discrepancies and will hopefully be helpful in the future as doctors try to find medications that actually help in the long run. As an aside on this presentation at the AHS conference, we were also able to distribute information to many of those in attendance on the proper use of oxygen and the importance of making it available to people with cluster headaches as a first line treatment. This in particular is one of our most important areas of education. Psychological Burden: We have two separate surveys/studies in the works regarding some of the psychological issues that surround cluster headaches. One will be looking at the psychological burden that clusters cause to the sufferers and their families and will eventually be a huge help in explaining the needs of additional studies into PTSD issues and assist us in our negotiations with different government agencies for increased research funding and benefits. Everyone on our patient registry should be getting information on this and how to participate in the near future. 2015 Clusterbuster Conference The 2014 conference in Nashville was another huge success and will be difficult to top but 2015 is already stacking up to be even bigger and better. Our conferences have grown in attendance as well as the line ups of those making presentations being more exciting and informational each year. 2015 will be the biggest and best yet and will be held in Chicago on the weekend of September 17th thru the 20th. Information on hotels and registration will become available after our trip to DC for the headache on the Hill event. These dates are set though so you can start making plans. You can expect a great list of presentations, updates on all the clinical studies and meeting a wonderful group of friends and cluster family members. In Closing; We all look forward to a year of great progress for all cluster sufferers and their families as we work together with other organizations such as the AHS, AHMA & AHDA and all their associated organizations. We are working with many of the best research institutions and researchers in the US, Canada and Europe and making an impact on the international medical community. I want to thank the Clusterbuster Board of Directors as well as the dozens of volunteers that have put so many hours into building our successful and effective organization. Due to the hard work and dedication of so many, I expect 2015 to be a year filled with progress, growth and improved treatments and lives of cluster sufferers and their families, internationally. Bob Wold President Clusterbusters

Thank you all very much. WE have done a lot of good work. The results of our work is it's own reward. Bob

I am trying to get an update on Ralph but haven't heard back. He has the "C" other than Clusters what I did hear was not good. As I said earlier, he has helped hundreds of cluster people and never wanted any acknowledgement for what he has done for years. His only reward was coming to the conferences and meeting people that inspired him to do more. he knew that a lot of people are hesitant to order spores online and he did what he could to get them to people that might not have ever ordered them. Our community is full of heroes and he has certainly been that. Will keep everyone updated if I hear anything. Thank you, for him, for your kind words and healing thoughts. Bob

I received some very bad news today. Ralph is very sick and is not currently in the spore business any more. I don't know if that will ever change as he is in a struggle to survive. Ralph has been a very good friend to myself, Clusterbusters and people that suffer from clusters. Ralph has attended most of the conferences that were held in Chicago and has supplied free spores for hundreds of people with clusters. eating all costs including shipping. He always supplied spores at the conferences free of charge but very few people knew of his work with individuals. I hope some of that good karma comes back to him and helps him in this. I know a lot of you know Ralph and wanted to let everyone know. :-[ Bob

Just wanted to stop in to wish everyone here a Very Happy New Year. I am working on a year-in-review and a look ahead post and will post it here first as soon as it's complete. There is a lot to report and some incredibly important work that will take place in the year ahead. I want to thank everyone here as this group is responsible for most of the progress we've made and are also responsible for thousands of people with cluster headaches being able to treat their clusters better and safer than the last 400 years of the medical science community has offered. This groups support, research & willingness to be open and honest about what is best for people on a human level. Putting people's health and happiness above all else and at many times their own lives and personal freedoms at risk. Many of you have been with me and Clusterbusters since the first day we started with the old yahoo private group and many others also for years. I hope you are all as proud of yourselves and your work as I am of all of you, Honestly, many people go thru life causing more damage then good. Most people go thru life hoping to have some positive impact on their families and others they may love, Hoping that will also "trickle down" to others. People here go on the line to make life changing improvements in the lives of people they will never meet, I'm happy to go into battle with all of you as we try to change history in a positive way, just a little. It's not going to be easy but stick around as we blow the lid off of this damnable condition. Peace & Love Bob Wold

Patient Registry As announced at our conference in September, we have several clinical studies in the works. Some of which will most likely be asking for study participants within the next 9 to 18 months. These studies involve genetics, psilocybin, BOL and a couple others including one involving the psychological burden of cluster headaches. Anyone wishing to participate in these studies must be registered in our Patient Registry. Some of these clinical trials will have study sites outside the United States as well as within the US. This is an international registry and we are looking for people from every country to sign up. A couple of these studies in particular will be looking specifically for people living in the UK, Germany and Canada. Please share this information with anyone you may know residing in these countries. Please share so everyone, no matter where they live, has an opportunity to participate in these studies and play an active role in finding better treatments for cluster heaaches. To register, please go to this link: http://tinyurl.com/n9ou73a or http://survey.constantcontact.com/survey/a07e97nw2gdhuaj6cau/a01oyi1jyvcgv/greeting Bob Wold President Clusterbusters 10-21-2014

For all you Amazon shoppers out there...and I know you are out there.... They have a program where you can designate s small percentage of your purchase to be sent to your favorite non-profit organization. Clusterbusters is registered and would appreciate it if you would take a percentage of Amazon's millions billions and have them donate to our cause. A direct link to start shopping and donating: http://smile.amazon.com/ch/43-2081926 Thanks very much, Bob Wold

This is the official poster for the 2014 conference in Nashville. There will be large glossy posters available in Nashville very soon if anyone in the area wants to take a few and pass out at your local headache clinics and doctors offices. Send me a message if you'd like to pass a few out. You can also print this version up and mail or deliver to your local offices. Bob

I met with the company doing the studies and took a look at the device. They will be at our conference in Nashville. Bob

Thanks to everyone filling out the questionnaire. Even if you wouldn't ever want to take part in any study or survey, it will help us if everyone fills it out. It will give us important information on where we are located generally, where our reach has expanded to, basic numbers on gender etc. This will also always be open and building and I would especially like all of our long time members to get listed on this important registry. Don't worry, none of the info will never be shared with anyone outside of a medical setting. You won't be getting emails selling you toothpaste ;-) Also, if anyone is concerned about completing it and having an IP number associated with your submission, you can print it out and mail it to us and we will enter the information. You can also do the same with anyone you know that isn't online. You can also print up the information and bring it to your doctors and ask them to share it with any of their other cluster patients. Thanks to everyone for your loyalty, the help you have been to others in this group and the help you have all been to Clusterbusters. We have come a long way and have a lot of great adventures ahead. Everyone that has helped keep this board active and helpful to others has made a difference in others lives. I can attest to the fact that besides the people you see helped here, there are a LOT of "lurkers" that are also helped every day here. Clusterbusters P.O. Box 574 Lombard, Il 60148