Words from Headache on the Hill Warriors

By Jeannette & Jorie

Headache on the Hill, as we’ve discussed before, is an advocacy event held annually where advocates, caregivers, and those of us living with migraine and headache disorders come together to take legislative action at Capitol Hill.

This year’s 11th annual Headache on the Hill brought about over 150 people, representing 40 US states. We all came together to lobby for The Opioids and STOP Pain Initiatives Act” otherwise known as Bill H.R.4733 / S.2260.

Each of us, while together and supporting one another constantly at every moment, experienced many different things. We all felt different emotions, endured different pains and illness throughout the event, and came away having learned numerous new things, making new memories, meeting new people, and so much more.

Here we’ve compiled the words of those of us at Headache on the Hill this year to tell our stories and share with you just what was going through our heads as we went through those rigorous, yet rewarding few days.

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“Advocacy is simultaneously the most personal and public thing you will ever get to be a part of.” – Katie Pearson, MSW Student & Patient Advocate


“One week ago 150 new friends and I stormed Washington D.C. One week after we first met I am still excited. Excited that I have 150 new friends from around the country. Excited that I found other people like me, people who understand me and my neurological disorder. Not once did I feel like a loser, a whiner, pathetic, ashamed, judged or embarrassed. I’m excited that we can lean on and help each other. Excited that together we can make a difference. Excited that our voices were heard. Excited that there can be purpose to my pain. I want my pain to make me a hero. Of the many challenges I have faced it my life, migraine has been the greatest. I have learned so much and I am so grateful for the experience that I had. I’m so grateful for my new friends. You have taught me that I don’t have to apologize for my illness and what it keeps me from doing, and that even though much of my brain is mush, I can still accomplish great things. I have stopped describing myself in terms of who I was, but who I am now. I hope I’m able to do it all over again with you next year. Thank you all.” – Cathy DiBernardo, Migraine Advocate


“When we usually see doctors and patients together, it is from across an exam table. Here we were all people fighting for the same cause on the same side if the room.” Catherine Charrett-Dykes, Founder of Chronic Migraine Awareness, Inc.


“Headache on the Hill was an amazing and truly rewarding experience to advocate for migraine, headache, cluster and chronic pain. It is really a full circle moment to see my years of disabling pain turn into actionable advocacy work.  Seeing healthcare professionals, advocates, patients and caregivers come together for a singular cause was beautiful and a sight that isn’t always captured.  I have never felt more empowered and united.  I can’t wait to do it again next year!” – Jaime Michele Sanders, Founder/Blogger at The Migraine Diva


“For me, it wasn’t just about advocacy — that was huge, but it was also finding and spending time with fellow migraine warriors who just ‘get it.’ No explanations needed. It was personal to all of us, fighting for recognition.” – Dawn Hadland, BSN, RN


“It was beautiful to see approximately 150 advocates, from different backgrounds, united in this fight, helping and supporting one another during this important journey. We were not alone.” Jeannette Rotondi, LSW; U.S. Pain Ambassador, Chronic Migraine Awareness Volunteer, Migraine Mantras Contributor


“Together we can conquer the world. Let’s keep hope alive.” – Rosa Sundquist, Patient Advocate


“Headache on the Hill was a chance to merge two of my greatest passions: my interest in advocating for vulnerable groups through public policy, and carrying my sister Melissa’s story forward. My sister Melissa took her own life in 2013 due to unrelenting struggles faced from her chronic migraines, and since then, I have wanted to use her story to make a difference. Having the ability to share her story with my elected officials, with the hopes of putting a face to our ask, was one of the most important things I have ever done.”  – William Edward O’Dwyer IV, Advocate

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“For me it was an honor to be invited to HOH to share my daughter’s story and fight for a community that I am passionate about helping. I believe in this bill 100%. The opioid crisis has hurt the chronic pain community and we are going backwards instead of forward in helping their quality of life. It was empowering to put a face to the reason we are asking for this bill, as I shared a picture of Melissa and wrote inside the card why it was so important to me that they co-sponsor this bill. I felt we made a difference at a level where they have the ability to help us. On a personal note meeting so many friends in person that inspire me everyday was an amazing experience.” – Becky Dwyer, Advocate

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(Header photo via American Migraine Foundation.)

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