eagleswings

Last autumn/winter we ran a survey to gather data on human suffering from a range of conditions and experiences, and you were kind enough to participate by reflecting on your own suffering and providing responses, for which we are grateful. Some of you gave detailed descriptions, all of which were read. We have now finished analysing the data and have written it up in a new post on the Effective Altruism Forum, which you can find here: https://forum.effectivealtruism.org/posts/hTGScBoBDKwmAcGP6/how-to-quantify-global-human-suffering-results-from-opis-s We included some of the text descriptions, which convey a sense of what some of the suffering is like, beyond the numbers. Of course there was no identifying information disclosed. We plan to submit a reworked version to an academic journal, making the case for suffering metrics and for a larger survey that builds on what we learned from this first one. Our goal is for the prevention and alleviation of suffering, and especially severe and extreme suffering, to become a top priority of our governments at all levels. If you’re interested, you can also have a look at our recently published Compassionate Governance: A Strategic Guide to Preventing and Alleviating Global Suffering. Many thanks again, and wishing you to be free of suffering, Jonathan

Clusterbusters Executive Director and some board members will be in Scottsdale, Arizona this week. First a CHAMP Coalition meeting and then the American Headache Society Meeting- many of our favorite clinicians will be speaking! Looking forward to hearing updates and getting more ideas of ways to help our community. https://headachemigraine.org/coalition/ https://americanheadachesociety.org/events/2025-scottsdale-headache-symposium/agenda

Hi all! I'm considering starting a new local/regional support group for Illinois since we have a conference every other year in Chicago. Any ideas on days/times that would be good for attendance? Would a 6pm CT or 7pm CT on a weekday work well or a weekend day/time? I'd like to be able to advertise something like the 2nd Thursday of the month at 7pm type of time so it's consistent. Open to ideas and I'll lead it until someone else feels comfortable and I will always be available for support. Just thought this might be helpful and if there are people who have an idea of another location that could use a virtual/zoom support group, let me know. We have California and Texas and both have been really amazing groups.

We had Dr. Rev. Tammy Isaac come to our conference this year. I reached out given November is Family Caregiver Month and she sent me these resources and she will create some NEW content for us next week! I'll try to remember to add them to the thread when they go live. Our Care Partners are so important! We want you to know how much we care and appreciate you - and remember...you can experience grief in this process too. We have Care Partner groups and programs! ⁠ ⁠ Below are some resources from our amazing friend Dr. Rev. Tammy Isaac. Those who were at the conference heard her speak, she has some resources I'd like to share. Please take a moment for you to read/listen to these- and know how much gratitude we have for you.⁠ ⁠ Blog Post: Carrying Love, Carrying Loss: The Caregiver’s Journey⁠ https://www.breathegriefcounselingcenter.com/post/carrying-love-carrying-loss-the-caregiver-s-journey⁠ ⁠ Permission to Breathe Podcast Episode: Caregiver Grief: Loving Through Loss Before Goodbye⁠ ⁠ Spotify: https://open.spotify.com/episode/5nqQFAs5Xre7m0HF5LJkGE?si=4iaIx_lYTiW6sU9Psrxnrw⁠ ⁠ Apple Podcast: https://podcasts.apple.com/us/podcast/caregiver-grief-loving-through-loss-before-goodbye/id1767836754?i=1000721385568

Clusterbusters is partnering with another nonprofit organization - ClusterFree. https://clusterfree.org/⁠ ⁠ They have sign on letters. One is global, then there is a list of locations - please check their site for both. They are working to:⁠ ⁠ To achieve our mission, we:⁠ ⁠ Publish open letters demanding that governments, regulatory bodies, and medical associations worldwide take action immediately.⁠ ⁠ Engage with policymakers globally to advocate for better access to treatments.⁠ ⁠ Publish research on cluster headache and support other researchers in the field.⁠ ⁠ Collaborate with entrepreneurs and philanthropists motivated to bring effective treatments to market.⁠ ⁠ Thank you ClusterFree for partnering with us and raising awareness of cluster headache on a global scale!

Do you experience Hemicrania Continua? We are starting a new group for those who experience another TAC (trigeminal autonomic cephalgia) called Hemicrania Continua. People experiencing this have 24/7 pain as well as other features that while can be similar to cluster headache. We want to support our siblings by giving them a place to meet others and also to reach out to the community with this support option. Third Thursday of the month at 1pm ET To attend, send Anna an email at anna@clusterbusters.org and she will add you to the calendar invite with the zoom link.

Care Partners Experiencing burnout? Feeling overwhelmed? Want to learn self-care tips? We want to support you in YOUR journey! Starting November 12th, Julia will be hosting a support group on the 2nd Wednesday of every month at 6pm CT/ 7pm ET Register in advance for this meeting: https://us06web.zoom.us/.../register/8AQ75ckZQn-ddzoYfreZbQ After registering, you will receive a confirmation email containing information about joining the meeting.

Craig Stewart is launching a new support group for those in New Zealand and Australia. It will meet on the 3rd Sunday of each month at: New Zealand: 6pm Australia AEDT: 4pm Australia AEST: 3pm Register: https://us06web.zoom.us/.../register/jBEVM84QRs-RP6lgNdFCmw After registering, you will receive a confirmation email containing information about joining the meeting. If you have any questions, contact Craig at Craigedstewart@gmail.com or Anna at anna@clusterbusters.org

Now I'd like to announce: The Board of Clusterbusters has a few announcements. Welcome Gary Gibson to the board! Gary began experiencing chronic cluster headaches and hemicrania continua in 2003, marking the start of a journey that has spanned more than two decades., Gary understands firsthand the challenges faced by patients seeking effective treatment and accurate information. That search for answers and community led him to Clusterbusters. Since joining the organization, Gary has become an active contributor to its mission through the Clusterbuddies peer-to-peer support program and by facilitating a regional support group in Texas. He is also a passionate advocate for the headache community, regularly participating in Headache on the Hill to raise awareness and promote legislative action that supports headache disorder treatment, research, and care access. Outside his advocacy work, Gary holds a Bachelor’s degree in Mechanical Engineering from The University of Texas at Austin and manages an engineering team in the energy and aerospace industries. Gary’s wife is an active supporter and advocate, working alongside him to strengthen the Clusterbusters community and uplift both patients and caregivers. Beyond his professional and volunteer commitments, Gary and his wife enjoy spending time outdoors, traveling, cheering on college football, and sharing life’s adventures with their three granddaughters. Anna Williams will move from Interim Vice President to Interim President. Mary Franklin will be the Interim Vice President. Thank you for your support as we adjust through the changes of 2025. The interim positions give us time to reflect and discuss who will best fill the positions. To read about our team: https://clusterbusters.org/about/directors-and-team/

This will be a bit long, but wanted to share some messages from the board. First - We would like to share a message from Ainslie. Dear friends, It’s is with great sadness that due to ongoing health concerns, I have made the very difficult decision to resign from my position as President of the Clusterbusters Board of Directors. I have supported CB since its infancy in the early 2000’s, attended my first US conference in 2015, and was voted onto the Board in November 2019. I became Vice President in April of 2020 and President in April 2025 to date. I was honoured to organise the first U.K./European conference in my home city of Glasgow in 2023, followed by a second event in 2024. In total, 6 years as a very,very proud member of the team. I have been so fortunate to be a part of such an amazing organisation and to work with such wonderful people globally. This has brought me huge joy and wonderful life-long friendships. I wish Clusterbusters continuing success and each individual Board member all the very best in their new leadership roles. It’s quite the amazing team! There will never be enough days for me on this earth to show my gratitude to Clusterbusters. They saved my life. With love and thanks, Ainslie We have appreciated Ainslie's leadership, not only in 2025, or since 2019 when she joined the board, but for her many years of being in our community inspiring HOPE. While it is with great sadness that she steps away from her position, we fully support her taking care of health. She is an amazing soul, who has given much to our community. She has put UK/Europe on the "map" and cultivated a community, maybe rather many communities. She has helped the cluster headache community in so many ways we cannot count. Thank you Ainslie. We love you, appreciate you, and respect all you have done. With much gratitude.... Clusterbusters

We have such an amazing community and it's hard to just pick a few people, so for our 20th we picked a few extra But seriously we have the best community- just wanted to give a shout out to these amazing people!

The recording is on our YouTube channel if you'd like to watch.

TUESDAY NIGHT October 7 at 7pm ET During the session, you’ll: ● Understand how gammaCore works to treat cluster headache, including the science behind vagus nerve stimulation and its role in regulating pain signals. ● Learn strategies for incorporating gammaCore into your care plan and understand when and how to use it effectively. ● Have the opportunity to ask questions during a live Q&A session. Register Now: https://us06web.zoom.us/meeting/register/SrvzB0d4RoiK4Dz8ITjvrQ

The following is information from our valued sponsors: Lobe Sciences and Cynaptec Pharmaceuticals are developing a form of psilocybin as a medical treatment for Chronic Cluster Headache. Join us at this year’s conference to hear about the drug development plan and their passion for bringing a new treatment to market to help people with cluster headache. https://www.lobesciences.com/ (OTCQB:LOBEF CSE:LOBE) https://ca.linkedin.com/company/lobe-sciences https://www.linkedin.com/in/frederick-d-sancilio-42585316

Our conference starts one week from today! We are quickly getting all the loose ends tied up and cannot wait to welcome everyone. We'd like to give a quick shout out to our sponsors- without them, this conference would not be possible. Registration is still open! Clusterbusters 20th Annual US Patient Conference Grapevine (DFW), TX September 11-14th More information and register here: https://cbdallas2025.planningpod.com/

Thank you!

Thank you Toni for serving the members in Finland- much love to all of you in Finland!

Have you had success with a treatment, then find it stops working? Dr. Chris Gottschalk will be talking about this as it is one of our frequently asked questions. Also - if you have registered but not gotten your hotel room- you need to reserve it asap. If you have a room, but haven't registered- please register so we can plan for your attendance! 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/

Thank you!

Share Your Experience In the tradition of citizen science by Clusterbusters, we are conducting an online survey to learn about our community’s experiences with DMT. The survey asks questions about how people with cluster headache access and use this treatment, and what positive and/or negative outcomes they have experienced. Survey participation is voluntary and your personal information will be kept private. The survey will take you about 15 minutes to complete. Survey Eligibility Requirements: Adults 18 years or older Have cluster headache Have tried DMT for cluster headache treatment You will need to complete the survey in one sitting, so please start when you have enough time. Having complete responses is important to the integrity of the study. If possible, we recommend using a computer or tablet to take this survey instead of a smartphone. This survey study is being conducted in collaboration with Yale University. Thank you for sharing your experiences to help us understand and improve treatments for cluster headache. https://survey.alchemer.com/s3/8319518/Online-Survey-of-DMT-dimethyltryptamine-Use-in-Cluster-Headache

Have you been misdiagnosed with migraine or had a delayed diagnosis because you have migraine? Dr. Stephanie Nahas of Jefferson Headache Clinic has been involved in creating a program for cluster headache. In the world of headache, a more rare condition such as cluster headache can be lost when migraine is so much more common. 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/

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/

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!)

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/

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.