MichelleC

Dr. Emmanuelle Schindler will be presenting "Research: What's Next?" as well "Busting Basics" with members of the Clusterbusters Board and Bob Wold, our Founder and Executive Director. 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. Schindler is Medical Director of the Headache Center of Excellence at Veterans Affairs (VA) Connecticut Healthcare System and Assistant Professor of Neurology at Yale School of Medicine.Among her efforts to optimize the management of headache disorders, she has developed and executed the first controlled trials investigating the effects and mechanisms of action of psilocybin in cluster, migraine, and post-traumatic headache.Previously, Dr. Schindler studied the neuropharmacology of psychedelics and other serotonergic compounds in the context of receptor binding and intracellular signaling.

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.theflourishacademy.org

Clusterbusters 18th Annual U.S. Patient Conference is less than a month away. Join us Sept 7-10 for a long weekend of cluster community, support and education! For more information and to register: https://386964908.planningpod.com/ Secure your room at the conference hotel through August 16, 2023, to receive a special discounted group rate. Due to a generous donation, limited scholarships are still available if you need some travel assistance. Scholarship Applications: https://conta.cc/3DUZxIU

Jon you raise some very good points. Support truly needs to be individualized, and families need to be listened to. There is often a struggle when trying to get accommodations for students in order to help their child succeed. The problem is that many schools are denying students any assistance at all, despite the fact that they qualify under the IDEA Act already based on their condition. The only wording to be added is to clarify that headache disorders are included for the schools/districts that are confused or using that as an excuse to disregard these students needs. By including headache disorders explicitly, it allows a clearer path if they continue to be denied for any reason. If students are not getting the type of care and instruction they need, families will have better grounds to fight for it. Ideally every child who needs it deserves to get an Individualized Education Plan based on their needs, and it will be executed properly. I'm 47 but grew up in the special education system with severe daily chronic migraine. My mother advocated for me, even in a "good" school district there were problems getting services. Now I am a mother who has a teen with chronic migraine, in schools that are not as good and are understaffed since the pandemic. I can't fathom what it's like for those with lesser known headache conditions. Working with Clusterbusters and other headache orgs has been an eye opening experience. The language is solid, the real challenge begins once those rights are cleared up with those who are reluctant to provide services. Hopefully the future will lead us to a place where teachers are paid more and we can have a more solid bank of special education teachers that are not too burned out from being over worked. We have much work to do. Thanks for sharing your thoughts. Keep in mind I am not part of the AHDA beyond being an HOH advocate and partner sharing for CB above as well. In this reply I am sharing my own understanding from working with HOH materials, plus my own thoughts in return. ~Michelle

Millions of American children and teens experience disabling forms of migraine and severe headache disorders. We need to ensure they have access to the special education services they qualify for. We are so grateful to Representative Cori Bush for being a leader and champion for children living with headache disorders. Take action with this form letter: https://qrco.de/idealetter Please call your Rep's office, it's quicker & and even more effective. A phone script & more is included in the link below. They need to sign by Friday. *Edit - Deadline was extended to Monday! Action Toolkit: https://conta.cc/46X9JxJ Thank you for lending us your voice with this critical need. #HOH2023

We need your input. Clusterbusters is excited to share our new and comprehensive Cluster Headache Medication & Psychedelic Use Survey. The purpose of the survey is to better understand what medicines, alternative substances, devices, procedures and psychedelic substances people use to treat their cluster headache. The survey is open to people 18 years old and older who have been diagnosed with cluster headache. This research is a joint project with UTHealth Houston. The survey is expected to take 20-45 minutes to complete and no personally identifying information is collected. The results will be used for research and advocacy purposes. The data will advance scientific understanding of treatments for cluster headache and contribute to the development of new therapies. Please take the survey and share your experiences: https://survey.alchemer.com/s3/7134634/Cluster-Headache-Medication-Psychedelic-Use-Survey-2023

We need your input. Clusterbusters is excited to share our new and comprehensive Cluster Headache Medication & Psychedelic Use Survey. The purpose of the survey is to better understand what medicines, alternative substances, devices, procedures and psychedelic substances people use to treat their cluster headache. The survey is open to people 18 years old and older who have been diagnosed with cluster headache. This research is a joint project with UTHealth Houston. The survey is expected to take 20-45 minutes to complete and no personally identifying information is collected. The results will be used for research and advocacy purposes. The data will advance scientific understanding of treatments for cluster headache and contribute to the development of new therapies. Please take the survey and share your experiences: https://survey.alchemer.com/s3/7134634/Cluster-Headache-Medication-Psychedelic-Use-Survey-2023

Less than two months until the Clusterbusters 18th Annual U.S. Patient Conference in Disney Springs, FL! Join the cluster community for a long weekend of support, education, and family from Sept 7 - 10, 2023.For more info and to register:https://386964908.planningpod.com/

We can't wait to see our cluster family in person September 7-10, 2023 in Disney Springs, FL at the Clusterbusters 18th Annual U.S. Patient Conference! Register today! https://386964908.planningpod.com/