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Everything posted by Psiloscribe

  1. We need your help. This is a chance for everyone to be an advocate for the cluster community. Clusterbusters along with representatives from the Alliance for Headache Disorders Advocacy (AHDA) will be visiting the offices of CMS during the Headache on the Hill event in April. We will be continuing our efforts to get CMS to reconsider their determination of non-coverage of oxygen for Americans covered by Medicare and Medicaid. We will be following up on the letter that was sent by the Senators asking for reconsideration and our continuing discussions with CMS. Their determination is bas
  2. You can try this link to the event page http://tinyurl.com/m4l6ybl Bob
  3. 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 qu
  4. 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 in
  5. 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
  6. 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
  7. Yes it is big news. Thanks for moving it to the general board also. Bob
  8. 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
  9. 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 prog
  10. 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 psilo
  11. 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 Com
  12. 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
  13. Dear HOHers, This yearÂ’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 b
  14. 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
  15. Thank you all very much. Polling is closed. More info to follow soon. Bob
  16. 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
  17. 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 s
  18. Thank you all very much. WE have done a lot of good work. The results of our work is it's own reward. Bob
  19. 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 up
  20. 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 goo
  21. 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, researc
  22. 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 looki
  23. 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
  24. 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
  25. I met with the company doing the studies and took a look at the device. They will be at our conference in Nashville. Bob
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