eagleswings Posted June 27 Share Posted June 27 June is Migraine and Headache Awareness Month Our patient conferences are so important - there's no other place where you will see over 100 people gathered in a room who are affected by cluster headache. This is vital to those who experience cluster attacks but also to the Care Partners as well. There are clinicians who not only come to share their knowledge, but it's a time for them to sit with our community and learn as well. We have it all in Grapevine, TX September 11-14th. Whether this is your first conference or your 20th, we want to welcome you! More information and register here: https://cbdallas2025.planningpod.com/. IF you aren't sure - comment, message, email us and we can chat about it. It can be difficult to walk into a place and not know anyone, especially when you experience a disease that has you running to hide. We have a ClusterBuddies program and one way that program can help is we can pair you up with a longtime attendee so that you already know someone before you arrive. Clinicians, we will be offering CME/CEUs! We are excited to have you with us as well. We want to get to know you and be able to help you feel better equipped to help your patients with cluster headache. Pain free wishes to all From the Board of Clusterbusters and our Founder/Executive Director Bob Wold 1 Quote Link to comment Share on other sites More sharing options...
eagleswings Posted July 6 Author Share Posted July 6 Counting down to the conference- I'll add speaker highlights to this thread. Patient Advocate, Craig Stewart will be flying all the way from New Zealand to join us! He has studied and become a resource for the community on not only the D3 regimen but in understanding nutritional impacts as well. The goals of his talk will be: A comprehensive guide to the Vitamin D3: Anti-Inflammatory Regimen, including what it is, how to start, loading dose protocols, safety considerations, and real-world efficacy. He will also explore the growing body of research connecting Vitamin D, nutrition, and the gut microbiome in migraine, while highlighting how this emerging field may eventually shape our understanding of cluster headache as well. His presentation is set for Friday after lunch at 1:30pm CT Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/ 2 Quote Link to comment Share on other sites More sharing options...
eagleswings Posted July 7 Author Share Posted July 7 Dr. Shuhan Zhu is a neurologist with a subspeciality in headache disorders. She works at at BWH/Faulkner Headache Center where she sees patients with migraine, cluster and other disorders including CSF volume related disorders. Challenges in Diagnosis of Cluster Headache How does a doctor handle diagnosis when the path isn’t clear? Dr. Zhu found a case that confounded her for 6 months. She will go through the steps she went through to help get an accurate diagnosis for her patient. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/ 2 Quote Link to comment Share on other sites More sharing options...
eagleswings Posted July 10 Author Share Posted July 10 A Beloved Clusterbusters Tradition: The Silent Auction & Raffle! Get ready for one of the most fun and anticipated moments of our in-person conference—the Silent Auction and Raffle! This time-honored tradition is not only a great way to connect and celebrate, but it also helps raise critical funds to support Clusterbusters’ mission. Attendees are invited to bring items to donate! We love seeing a mix of: Psychedelic- and mushroom-themed treasures Unique gifts representing your home state or country Handcrafted, funny, or one-of-a-kind treasures Expect some lighthearted competition, lots of laughter, and maybe even a friendly bidding war or two. It's a moment of community, creativity, and generosity—all for a great cause. Come ready to donate, bid, and have a blast! Let’s make this year’s auction one to remember. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/ Quote Link to comment Share on other sites More sharing options...
eagleswings Posted July 10 Author Share Posted July 10 Bill is a long-time veteran of cluster headaches. He has been active in the online community and was a member of OUCH USA for many years. Considered by many as an expert on the use of oxygen in the management of cluster headache, Bill will share his knowledge during our pre-conference: “Oxygen Demonstration.” This will be an opportunity to learn more about oxygen use including tips and tricks to optimize its effectiveness. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/ Quote Link to comment Share on other sites More sharing options...
eagleswings Posted July 16 Author Share Posted July 16 Have you wondered how NIH funding affects research for cluster headache? NINDS is the department for most headache diagnoses. We are honored to have Dr. Michael Oshinsky as a presenter. He works within the office of NINDS and can explain the impact of research on our community Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/ 1 Quote Link to comment Share on other sites More sharing options...
jon019 Posted July 16 Share Posted July 16 ...the first question i'd ask is: what funding? cancer research, among others, has already been cut. we have never experienced funding for CH anything besides minimal...now? 3 Quote Link to comment Share on other sites More sharing options...
eagleswings Posted July 18 Author Share Posted July 18 Yea, I think it's a valid question now. I was in a meeting yesterday actually on behalf of several chronic pain organizations and it was with a staffer of a senator on that committee that is setting the tone for cuts, and they just don't get it. They don't understand that we had pennies and now they are cutting up our pennies. BUT, I hope Dr. Oshinsky can talk through research. I heard him talk a couple years ago and it was really amazing- and one of things we have to do, is get in the rooms- many areas of government and outside of government - there are patient voices on panels in the rooms - and we have to get seats in those rooms. 1 Quote Link to comment Share on other sites More sharing options...
eagleswings Posted July 18 Author Share Posted July 18 Care Partner Perspective Perspective matters and this year we are honored to have the daughter of someone who experiences cluster headache to give their picture of this disease. Anna's mom has cluster headache and it has shaped her educational path. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/ 2 Quote Link to comment Share on other sites More sharing options...
eagleswings Posted July 19 Author Share Posted July 19 Introducing our Team: Anna Williams - Vice President Chronic Cluster Headache 13 years New Albany, IN Duties include: US Conference Planning Committee, ClusterBuddies Coordinator, 5k Coordinator Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/ Just a note our room block is filling up fast! Be sure to book your hotel (and register too so we can plan well!) 1 Quote Link to comment Share on other sites More sharing options...
eagleswings Posted Tuesday at 07:25 PM Author Share Posted Tuesday at 07:25 PM Introducing our Team: Bob Wold - Founder/Executive Director Episodic cluster headache with periods of chronic - 40+ years Lombard, Illinois Duties include: Everything from legislative, education of clinicians, research initiatives, to conference planning and fundraising. Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th Room Block Closes on Tuesday, August 19, 2025 at 11:59pm CT. More information and register here: https://cbdallas2025.planningpod.com/ 1 Quote Link to comment Share on other sites More sharing options...
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