MichelleC

Alx, I don't know your situation or how much a scholarship might be able to cover, but I do suggest that if you are really interested in attending you apply for a travel scholarship as it's within a day's travel of where you are located. If travel isn't something you can manage, I understand as someone who can't do it myself. But I wanted to make sure you at least were aware that the application was available. Apply HERE. Take care!

Clusterbusters is excited to announce our 9th Annual VIRTUAL #CureforCluster 5k for Cluster Headache Research will be held Saturday, June 22nd, 2024. Cluster headache affects 1 in 1000 people. This virtual 5k allows clusterheads to raise awareness for cluster headaches in their hometowns. This year the #CureforCluster 5k Race Bags will only be available to U.S. Residents due to rising shipping rates and tariffs. We apologize for the inconvenience. For more information and to register: https://conta.cc/3Dx1mvU

Alx, We would love to see you if you are able to make it. Hosting a conference in another location in Europe would require additional funding, as well as very dedicated volunteers. The Scotland location has a number of benefits, and one of those is that our Board Member Ainslie Course lives nearby and oversees the conference including negotiating local deals. Hosting another conference next year will also be dependent on funding. I hope this answered your question.

Clusterbusters is excited to open registration for our 2nd U.K./European conference. This is a great opportunity to support, educate and advocate. Join us for a weekend with speakers including neurologists, patients, and caregivers. The agenda will include safe rooms, treatment workshops, demonstrations, and the opportunity to share experiences and learn from others, collaborate, and have fun in the vibrant city of Glasgow! We look forward to welcoming you! https://cbglasgow2024.planningpod.com/

Have you tried many different medicines for your cluster headache? How effective were they? Have you tried various psychedelics at varying dosages and schedules? How did the psychedelics affect the frequency or intensity of your attacks? If you haven’t already, please take the Cluster Headache Medication and Psychedelic Use Survey. This is intended for people 18 years old and older who have been diagnosed with cluster headache. We want to understand what is working for our community and gain insights to inform advocacy and the development of better treatments. This is an anonymous survey and no personally identifying information is collected. It is extensive and may take 20-45 minutes to complete. The survey must be completed in one sitting (you can’t save and come back to it). The survey is easiest to do on a computer or tablet, but can also be done on mobile devices. This survey is a joint project of Clusterbusters and UTHealth Houston. We thank you for sharing your experiences to help us understand and improve treatments for cluster headache. Please share your cluster headache treatment experience: https://conta.cc/3NRqa7a

To connect with others who understand your experience with cluster headache, check out our virtual support groups and one-on-one support. https://clusterbusters.org/support-groups/ Please consider supporting this and other programs with a one time or recurring donation. https://conta.cc/43RhF1N

Now available for pre-sale! Psychedelic Outlaws: The Movement Revolutionizing Modern Medicine by Joanna Kempner, PhD: How a group of regular citizens debilitated by cluster headache developed their own medicine from home-grown psilocybin mushrooms—producing near-clinical grade protocols, and their fight for recognition in a broken medical system. Pre-order on Amazon: https://a.co/d/eOhGufA Joanna Kempner, Psychedelic Outlaws: https://conta.cc/3RrQs0v

The ClusterBuddies peer-to-peer program connects you with a supportive, empathetic, knowledgeable, and experienced volunteer who understands life with cluster headache and can say, “I've been there too.” If you are a support-seeker and would like to be paired with a support-giver ClusterBuddy, please complete this application form: https://conta.cc/41tWMJy If you are an experienced clusterhead interested in being a support-giver and helping a support-seeker as part of the ClusterBuddy program, please complete this application form: https://conta.cc/3v4avdL Please consider supporting this and other programs with a one time or recurring donation. https://conta.cc/43RhF1N

UT Houston is running a clinical trial of a modified version of Batch’s Vitamin D regimen. For more info, contact nctt.wec@uth.tmc.edu or phone 713-486-7771 https://conta.cc/3N9LVyv High-dose vitamin D plus multivitamin in the prevention of cluster headache: A randomized, double-blind, placebo controlled trial. Who: People with cluster headache (episodic and chronic both welcome!) between 18-70 years old who have cluster headache cycles lasting at least 6 weeks. What: A study to self high-dose Vitamin D (10,000 units per day) plus a multivitamin will reduce the number of attacks over 3 weeks. Where: We are enrolling anywhere in the United States (we will ship you the medication and use your local Labcorp for bloodwork). Why: Many cluster headache patents report that high-dose Vitamin D reduces the number of attacks. There has never been a controlled trial (until now)! How to get more information: Contact The Will Erwin Headache Research Center email: nctt.wec@uth.tmc.edu or phone: 713-486-7771

SAVE THE DATE for Clusterbusters 2nd U.K./European Conference May 31st - June 2nd, 2024. More info coming soon! Contact ainslie@clusterbusters.org with any questions. Please consider supporting this & other programs with a one time or recurring donation. https://clusterbusters.org/donate/

Only a few days left to apply for Headache on the Hill 2024. We hope you join us in DC. Your voice can make a difference! Apply by December 11th at https://qrco.de/hoh2024 Please consider supporting this and other programs with a one time or recurring donation. https://clusterbusters.org/donate/

Please share your experiences with cluster headache. Join in research on psychedelics, medicines, alternative substances and devices in our comprehensive Cluster Headache Medication & Psychedelic Use Survey. The survey is a joint project of Clusterbusters and UTHealth Houston. The survey is open to people 18 years old and older who have been diagnosed with cluster headache. The survey is anonymous and works best on a computer (can also be taken on tablet or mobile device). The results will be used to advance research and advocacy for cluster headache. https://conta.cc/3NRqa7a Please consider supporting this and other programs with a one time or recurring donation. https://clusterbusters.org/donate/

We hope you can join us in DC for the first fully in-person Headache on the Hill 2024 since the pandemic! Your voice can make a difference. Apply by December 11th at https://qrco.de/hoh2024 Register for HOH Q&A webinar on November 29th, 1pm ET: https://conta.cc/3Ria4Fi

We are excited to announce that early registration is OPEN for Clusterbusters 19th Annual U.S. Patient Conference - September 12-15, 2024. Join us for a long weekend of support, education, and family in Rosemont, IL. Sign up with discount code EarlyBird2024 by the end of 2023 and save $25! For more info and to register: https://cbrosemont2024.planningpod.com/

Save the Date! Clusterbusters is thrilled to announce that our 2nd U.K./European Conference will take place May 31st - June 2nd, 2024. Mark your calendars, and look for more information coming soon! Contact ainslie@clusterbusters.org if you have questions.

Most people who do HOH are people with headache disease that choose to use their voice to share their experiences have no background in lobbying when they first join. The goal is to have each state fully represented. In each team there are various headache types, and different background/stories to share which can help relate to each year's "asks". I have only done HOH virtually myself since 2020, but from my experience I can say that you would be on a team by state and district. Together you would plan ahead what each person's role would be in each meeting. They provide ample training and information ahead of time so you are fully prepared. Some flexibility is also needed as everyone has chronic pain and there may be a need for a last minute shift due to an attack and everyone is supportive. There are "asks" made each year that need to be presented, as well as brief personal stories shared in each scheduled meeting. As far as how in-person works with how meetings are scheduled, I would need to find someone who's done in person and/or is working with AHDA to answer that if you need specific details before applying. I do know that those who attend in person say it's a great community experience. They have a Q&A session I found which seems like a good place to start. Click to register for the Q&A Zoom here: Headache on the Hill 2024 Q&A November 29th 1pm ET Let me know if you need further information and I can try to connect you with someone. I will say that my time spent doing HOH has been entirely uplifting and educational over the years. If you are not physically up to the in-person event, please be aware that a separate virtual Headache on the Hill is planned for fall of 2024 to ensure the voices of those are unable to travel will also be heard. I hope that you are able to join.

Please join us for Headache on the Hill 2024 at the first fully in-person HOH since before the pandemic. Help us advocate for equitable policies for those living with headache disorders. Apply by December 11th at https://qrco.de/hoh2024

Clusterbusters 18th Annual U.S. Patient Conference is almost here! For those attending it's a good time to review tips to prepare for & travel with cluster headache: https://conta.cc/462QWjr

Ms. Heather Keschinger will be presenting a Caregiver Perspective at Clusterbusters 18th Annual U.S. Patient Conference.Heather has been married to Steven for over 40 years. She is a proud mother of two sons and a grandmother of twin girls. Heather has attended 3 Headache on the Hill Events and this will be her 10th conference.She has been a supporter/advocate/caregiver to her husband Steven with Cluster Headaches for over 20 years. She says "Clusterbusters has saved both of them."Join us in Disney Springs Sept 7-10, 2023. For more information and to register: https://386964908.planningpod.com/Due to a generous donation, limited scholarships are still available if you need some travel assistance. Scholarship Applications: https://conta.cc/3DUZxIU

Mr. Steve Keschinger will be co-MC at Clusterbusters 18th Annual U.S. Patient Conference. Join us in Disney Springs Sept 7-10, 2023. For more information and to register: https://386964908.planningpod.com/Due to a generous donation, limited scholarships are still available if you need some travel assistance. Scholarship Applications: https://conta.cc/3DUZxIUSteve was born and raised in New York and after working for the railroad for 27 years is enjoying his retirement living in South Carolina for the last 8 years. Steve has been married to his very supportive wife, Heather, for 40 years and they are the proud parents of two sons and grandparents of twin girls. He is a diehard NY Yankees fan along with the NY Rangers and NY Giants.Steve has had chronic cluster headaches for many years, after consulting many Doctors and neurologists and being on a harsh treatment plan and pharmaceutical merry go round, he discovered Clusterbusters, where he describes his connection as “meeting the most amazing, caring and understanding people I have ever known in my life. Clusterbusters members are my Family!”Steve has attended 3 Headache on the Hill events and this will be his 10th conference. He is proud and honored to be co-MC for this year's conference.

Mr. Phil Battle will be presenting his Patient Perspective at the Clusterbusters 18th Annual U.S. Patient Conference. Join us in Disney Springs Sept 7-10, 2023. For more information and to register: https://386964908.planningpod.com/Due to a generous donation, limited scholarships are still available if you need some travel assistance. Scholarship Applications: https://conta.cc/3DUZxIUPhil was born in Glen Cove, NY which is on the North Shore of Long Island. He is the middle child from a family of 10, 7 boys. 3 girls.Never married. No kids, but has always worked with kids volunteering his time coaching baseball and basketball.He has been a survivor of episodic cluster attacks for 14yrs. He was fortunate enough to have been diagnosed correctly by the first doctor he saw.He is a DIEHARD OAKLAND RAIDER Fan and is an ice cream addict. This is his 3rd conference the first being a life changing experience.

Join Ms. Anna Williams at Clusterbusters 18th Annual U.S. Patient Conference Sept 7-10, 2023 where she will be introducing ClusterBuddies, our new pilot program! She will also be presenting "Co-Occurring Headache Diseases/Misdiagnoses" with Dr. Melissa Rayhill.For more information and to register: https://386964908.planningpod.com/Due to a generous donation, limited scholarships are still available if you need some travel assistance. Scholarship Applications: https://conta.cc/3DUZxIUAnna had her first cluster headache attack in 2013. Like many in our community, she was initially misdiagnosed with migraine. In 2017, she experienced an increase in attacks and was diagnosed correctly. Discouraged over the absence of relief offered by the many prescription medications she was prescribed, Anna set out to research information about CH. Her research led her to Clusterbusters.org, where she further educated herself about the illness and its traditional and alternative treatment options. During this time, Anna’s condition shifted from being episodic to chronic. Also during this time, she felt compelled to help others with the condition and began affiliating with advocacy groups to raise awareness of the disorder and the challenges faced with getting properly diagnosed and treated.In 2020, Anna was diagnosed with SUNCT (Short-lasting Unilateral Neuralgiform headache attacks with Conjunctival injection and Tearing), which, like CH, is a Trigeminal Autonomic Cephalalgia (TAC). This led her to a new level of desperation for locating effective treatments. Finding the most helpful combination of treatments to best target her condition/s has not been easy, but with consistency and perseverance, she is steadily finding useful ways to manage the disease that was chipping away at her joy.In January 2023, Anna joined the Board of Directors for Clusterbusters.Anna is a proud mom to two teenage daughters who find themselves advocating and bringing awareness to headache disease.

TOMORROW! Founder and Executive Director Bob Wold returns to Clubhouse.com along with Board Member and President Eileen Brewer. Join them to discuss using psychedelics to treat cluster headache and other headache diseases with The Flourish Academy on August 24 at 12pm ET. You must have the free Clubhouse app to join.Join The Flourish Academy Psychedelics Club and the conversation here: https://conta.cc/3OXcNmv

Mr. Bill Mingus 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 and lunch sessions: “Oxygen - Making It Work For You. A Hands On Demonstration and Discussion.” This will be an opportunity to learn more about oxygen use including tips and tricks to optimize its effectiveness.Join Bill at Clusterbusters 18th Annual U.S. Patient Conference Sept 7-10, 2023. For more information and to register: https://386964908.planningpod.com/Due to a generous donation, limited scholarships are still available if you need some travel assistance. Scholarship Applications: https://conta.cc/3DUZxIU

Dr. Melissa Rayhill will be presenting "Co-Occurring Headache Diseases/Misdiagnoses" with Clusterbusters Board Member and Patient Advocate Ms. Anna Williams. Join them at Clusterbusters 18th Annual U.S. Patient Conference Sept 7-10, 2023. For more information and to register: https://386964908.planningpod.com/Due to a generous donation, limited scholarships are still available if you need some travel assistance. Scholarship Applications: https://conta.cc/3DUZxIUDr. Melissa Rayhill graduated cum laude from the University at Buffalo School of Medicine (SUNY) where she was inducted into the Alpha Omega Alpha honor society and Gold Humanism Honor Society. She completed her Internship and Residency at Boston University Medical Center in Boston, Massachusetts where she served as Chief Resident. She completed a Fellowship in Headache Medicine at the Brigham and Women’s Hospital/Harvard Medical School Program at the John R. Graham Headache Center.After her training, she joined the Department of Neurology at the University at Buffalo Jacobs School of Medicine. Dr. Rayhill was named a Fellow of the American Headache Society and a Fellow of the American Academy of Neurology. She served as an Associate Editor for the journal Headache, and serves on the editorial board for Pain Medicine. Dr. Rayhill is the Program Director for the Adult Neurology Residency Training Program at the University at Buffalo (SUNY). She founded the Women in Neurology section of the New York State Neurological Society, and currently serves as the society’s Treasurer.