Psiloscribe Posted January 2, 2015 Share Posted January 2, 2015 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 Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted January 2, 2015 Share Posted January 2, 2015 People don't march off into harms way behind just anybody Bob, thank you for your tireless work and dedication as well. Quote Link to comment Share on other sites More sharing options...
Fabalicious Posted January 2, 2015 Share Posted January 2, 2015 People don't march off into harms way behind just anybody Bob, thank you for your tireless work and dedication as well I agree with DM! Thank you SO much Bob, for all of your dedication, hard work, and for starting this group! You can surely count me as one of the lives that was not only saved, but had such a huge amount of quality put back into it. Thank you sir, from the bottom of my heart. HUGS! 8-) ;D Quote Link to comment Share on other sites More sharing options...
spiny Posted January 2, 2015 Share Posted January 2, 2015 Happy New Year to you too!!!! I look forward to your update. This site is a lifesaver for many and will continue to be so with all the great people who spend their time here. Thank you so much! You are changing history and leading others to a more PF and happy life. May your year be full of happiness and health! Quote Link to comment Share on other sites More sharing options...
alleyoop Posted January 2, 2015 Share Posted January 2, 2015 People don't march off into harms way behind just anybody Bob, thank you for your tireless work and dedication as well. [smiley=thumbsup.gif] [smiley=thumbsup.gif] [smiley=thumbsup.gif] Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 2, 2015 Share Posted January 2, 2015 diamondmaker wrote on Today at 1:12am: People don't march off into harms way behind just anybody Bob, thank you for your tireless work and dedication as well. Smiley Smiley Smiley Not to mention  [smiley=vrolijk_26.gif], [smiley=dankk2.gif], and [smiley=tekst-toppie.gif] Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 3, 2015 Share Posted January 3, 2015 What they said. Quote Link to comment Share on other sites More sharing options...
Psiloscribe Posted January 7, 2015 Author Share Posted January 7, 2015 Thank you all very much. WE have done a lot of good work. The results of our work is it's own reward. Bob Quote Link to comment Share on other sites More sharing options...
Psiloscribe Posted January 12, 2015 Author Share Posted January 12, 2015 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 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 13, 2015 Share Posted January 13, 2015 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. I don't believe a yay could be uttered (or in my case uddered) loudly enough, but I shall try: [move]YAY. YAY. YAY. YAY. YAY. YAY. YAY. YAY.[/move] Quote Link to comment Share on other sites More sharing options...
spiny Posted January 13, 2015 Share Posted January 13, 2015 Terrific update!! Works in progress are amazing, considering where we started from. Kudus to all who can attend HOH and these many other events. Getting the word out that we are here and we matter is getting results. THANKS! Quote Link to comment Share on other sites More sharing options...
ToniEvo Posted January 14, 2015 Share Posted January 14, 2015 This is totally amazing Many, many congratulations and enormous thanks to you Bob and all your admin team on this 'life-changing' site, and same to everyone else that give their time to contribute with support and advice. Wishing you all the best of everything during 2015 Quote Link to comment Share on other sites More sharing options...
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