Alliance for Headache Disorders Advocacy & The Headache Alliance

The BioInnovation Institute and Science Translational Medicine established the Women’s Health Innovation Prize to recognize researchers who have developed innovative advances with translational potential to impact women’s health globally. This may be work in areas of female-specific conditions including maternal health and chronic gynecological diseases, reproductive health including contraception and infertility affecting all persons, or elucidation of sex- and gender-specific approaches to conditions that affect women differently or disproportionately. The application deadline is November 1st, 2024: https://lnkd.in/eXW9QgEC

International Trigeminal Neuralgia Awareness Day was first commemorated in 2013 by supporters of the cause. In 2017, a resolution was put forth in the US House of Representatives to officially recognize October 7 as the national day. This date is recognized and observed around the world, not as a day of celebration, but a day we mark to acknowledge the many members of our community who suffer from debilitating facial pain. You are not alone. 🩵 To receive resources and information tailored to your journey with facial pain, visit https://lnkd.in/eWRgXn7f 

💻✨ Register Now for Our Lunch & Learn Webinar: Supporting Students with Headache Disorders in Higher Education ✨💻 Do you work with college or graduate students, or are you looking for ways to support students living with headache disorders? Join us for a special webinar designed to offer practical advice and guidance on securing the accommodations needed for academic success. Our expert panel includes a recent graduate, a university student health representative, a headache specialist, and an attorney, all sharing their insights on navigating the challenges of higher education with a chronic condition. Whether you're a student, educator, healthcare provider, or advocate, this session will empower you with tools to help students thrive. 📅 Date: October 17th ⏰ Time: 1PM EST 🔗 Register here: https://lnkd.in/ebFMDhwh Don’t miss out on this important conversation about making higher education more accessible and supportive for students with headache disorders! #HeadacheAwareness #HigherEdSupport #DisabilityAdvocacy #LunchAndLearn

Exciting opportunity!

🎉 Thank You, Headache on the Hill Advocates! 🎉 A huge thank you to the nearly 175 incredible advocates from 40 states who completed over 200 Congressional meetings yesterday for Headache on the Hill! Your passion and dedication are helping to push forward the needs of the over 40 million Americans living with headache disorders. 🙌 But the work doesn’t stop here! YOU can support the Alliance for Headache Disorders Advocacy's legislative efforts by taking just 2 minutes to send a message to your elected officials in support of the Safe Step Act, Advancing Research for Chronic Pain Act, and the CONNECT for Health Act. Every voice matters in the fight for better care and policies for headache patients. 👉 Take action now: https://lnkd.in/eZy8cPbX 💡 And don't forget, applications for our next Headache on the Hill open in November! Stay tuned for your chance to make an impact next year. Together, we are making headache disorders impossible to ignore! 💪 #HOH2024 #PatientAdvocacy #Migraine #HeadacheDisorder #Neurology #PatientAdvocate #HealthAdvocate #DisabilityRights

Thank you to The Hill, The Hill Events and Pfizer for convening an excellent event this morning on migraine and women’s health gaps which happened to coordinate with our Virtual Headache on the Hill! Alliance for Headache Disorders Advocacy & The Headache Alliance’s Executive Director Julienne V. spoke about our work, her own personal experience living with migraine and the ways in which policies impact patients’ access to the care they need and deserve. In case you missed it you can watch the full recording below! #migraine #patientadvocacy #HOH2024 #healthadvocacy

It’s National Voter Registration Day! No better day to check your registration status!

🙌 Thank You to Our Amazing Fundraisers! We are off to a strong start, and it’s all thanks to YOU! To everyone who has created a fundraising page or donated so far—your efforts are bringing us closer to making the National Mall Installation a reality. 💜 But we know we can do even better. To keep the momentum going, we need your help! If you’re able to give, please do. If it’s not within your means right now, ask your friends and family to consider donating to this groundbreaking project. We’ve made it easy with our Fundraising Toolkit—full of ideas for low-prep, community-based fundraisers that anyone can do. Whether it's hosting a small event or setting a simple goal, you can be part of making headache disorders impossible to ignore. 👉 Check out the toolkit and get involved: https://lnkd.in/erA4Z-8r 👉 Donate or share your fundraising page here: https://lnkd.in/ezMZnAG9 Together, we are going to create lasting change and demand better care for everyone living with headache disorders. Let’s keep the momentum going! 💜💪 #FlagItPurpleForHeadache #HeadacheAwareness #PatientAdvocacy

📢 ANNOUNCEMENT: We’re thrilled to announce the launch of a groundbreaking and historic event—Headache on the Hill: A Visual Installation, set to take place in Washington, D.C. in June 2025 during Migraine & Headache Awareness Month. This first-of-its-kind installation for the headache community will bring the stories of millions living with migraine, cluster headache, new daily persistent headache, trigeminal neuralgia, spinal CSF leak and other headache disorders to the heart of our nation’s capital. This isn’t just about raising awareness—it’s about demanding ACTION. The installation will serve as a powerful visual reminder of the urgent need for better care, research, and policies for the 40+ million Americans living with these often disabling conditions. And we need YOUR help! We’re calling on our community to help us raise $100,000. Whether you're a patient, provider, or ally, there are so many ways to get involved—create a fundraising page, share your story, or simply donate. Let’s come together and #FlagItPurpleForHeadache. Your support will help make this unprecedented call to action for headache patients louder than ever before. 👉 Get involved and donate here: https://lnkd.in/ezMZnAG9 #HealthAdvocacy #PatientAdvocacy #Migraine #Headache #HeadacheDisorder #ClusterHeadache #PatientAdvocate #Neurology #Neurologist

Reflecting on an incredible few days at the Clusterbusters conference! If you haven’t heard of cluster headache before, you’re not alone. Prior to my work at Alliance for Headache Disorders Advocacy & The Headache Alliance this condition isn’t something that was on my radar but now it’s a part of me and the stories of these patients will stay with me for the rest of my life. Cluster headache is widely understood as the worst pain known to humans, and are often called “suicide headaches” because of the high degree of suicidal ideation amongst those who live with this horrific condition. Approved medical treatments are limited and there’s so little research funding invested in this disease state. And yet, if you walked into the Clusterbusters conference you wouldn’t feel despondent because of the palpable joy in the room all thanks to my friend, Bob Wold who has given these people a community and hope. He hates to be called a hero but there is no other word for what he has done. He has saved so many lives. It was an immense privilege to be in the room and present on advocacy with Kevin Lenaburg (our presentation resulted in over 150 letters being sent to Congress in support of the Safe Step Act), but more importantly to bear witness to the incredible resilience and community of people living with cluster headache. When the medical world failed these patients, Bob and others sprung into action coming up with their own treatment options using psychedelic medicine and brought their treatment protocol to Harvard, a history of which you can read in Joanna Kempner’s incredible book, Psychedelic Outlaws. I cannot emphasize enough how brave that was. From my fellow Staten Islander, 9/11 hero, and friend Joseph Mckay, to my friend and patient advocate powerhouse Anna Williams, to the kindest man you’ll ever meet Tom Sayen, these people are no exaggeration, honestly some of the best of humanity and while I hate that they live with this condition, I’m so grateful to know them. And of course none of this would be possible without the incredible Eileen Brewer who is one of my besties and gives so much of herself to the headache community. There’s not a cure yet for cluster headache. But there is so much hope and promise and it’s truly an honor to play a tiny role in this work. Thanks for inviting me to speak, Clusterbusters. I’m fired up and ready to get to work!