Speaking Out for Headache Health in Washington, D.C.
At the Flags for Headache installation, advocates gathered to turn lived experience into action
On Wednesday morning, advocates gathered among more than 30,000 purple flags in Washington, D.C. to speak out for every person living with migraine and headache disorders who has been dismissed, delayed, misunderstood, or left without the care they need.
The Speak Out for Headache Health took place at the Flags for Headache installation at Raoul Wallenberg Mixed Use Field, where a sea of purple flags stretched across the field to represent the millions of Americans living with migraine and other headache disorders.
For many people in this community, these diseases are invisible to the outside world. Pain can happen behind closed doors. Missed school days, lost work hours, emergency room visits, canceled plans, family strain, isolation, and exhaustion often go unseen.
But on this morning, the flags made that invisible burden impossible to ignore.
Patients, families, clinicians, researchers, advocates, and community leaders came together during Migraine and Headache Awareness Month to call for greater recognition, stronger research investment, improved access to care, and federal action that matches the scale of these diseases.
A central focus of the morning was the HEADACHE Act, H.R. 5536, landmark bipartisan legislation introduced in the U.S. House of Representatives by Rep. Lori Trahan and Rep. Brian Fitzpatrick. It is the first standalone federal bill focused on migraine and headache disorders.
The HEADACHE Act would create a coordinated national response to improve headache education, diagnosis, research, access to care, public awareness, data collection, and workforce planning. Advocates can take action in support of the HEADACHE Act here.
“Last year, Flags for Headache began as a public awareness installation. This year, it is clear that it has become part of a national movement,” said Julienne Verdi, Executive Director of The Headache Alliance and the Alliance for Headache Disorders Advocacy. “Because of this community, more than 10,000 letters have been sent to Congress in support of the HEADACHE Act. Because of this community, we now have a landmark bipartisan bill introduced in Congress. And because of this community, we are continuing to push forward until migraine and headache disorders receive the federal attention they deserve.”
A Morning of Stories, Science, and Advocacy
The Speak Out brought together voices from across the headache disorders community, including youth, parents, first responders, clinicians, researchers, public educators, and advocates.
Speakers included Rep. Lori Trahan; Mohsin Starling, an adolescent living with migraine disease; Dr. Amaal Starling, a headache specialist, advocate, and Mohsin’s mother; Joseph McKay, a 9/11 first responder living with cluster headache; Dr. Jessica Lowe, a neurologist and public educator known as Dr. Brain Barbie; and Shelby Blondell, a singer-songwriter and Headache on the Hill advocate who closed the event with a musical performance.
Each speaker brought a different perspective, but the message was shared: headache disorders are real, disabling, and deserving of serious public health attention.
“For far too long, more than 40 million Americans living with headache and migraine disorders have been forced to suffer in silence, overlooked in our research priorities and underserved by our healthcare system. Invisible pain is real pain,” said Congresswoman Lori Trahan. “The HEADACHE Act will boost research, expand access to care, and confront the systemic inequities facing this community. I’m proud to lead this fight alongside the advocates who refuse to let these disorders be dismissed any longer, and I won’t stop until every patient gets the care they need and deserve.”
Mohsin Starling spoke for children and teens living with migraine.
“I am 16 years old and I have migraine. I am here to speak on behalf of all kids with migraine,” said Mohsin Starling of Arizona.
His mother, Dr. Amaal Starling, spoke both as a physician and as a parent.
“People living with migraine deserve to be seen. Deserve to be heard. They deserve timely diagnosis, effective treatment, and access to care,” said Dr. Starling.
Joseph McKay shared the reality of living with cluster headache, one of the most painful conditions a person can experience, and reflected on what it means to keep showing up in hard moments.
“Cluster headache is not something you can simply push through. It is one of the most painful conditions a person can experience, and too many people still struggle to get a diagnosis, find a specialist, or access treatments that can help. As a 9/11 first responder, I know what it means to keep showing up in hard moments,” McKay said. “But people living with cluster headache should not have to fight alone. This community, this campaign, and the HEADACHE Act are about making sure these diseases are finally recognized with the urgency they deserve.”
Dr. Jessica Lowe spoke about the role of education, advocacy, and public understanding.
“Migraine is far more than a headache. It is a complex neurological disease that affects millions of Americans, yet it remains one of the most misunderstood and underfunded conditions in medicine,” said Dr. Lowe. “Advocacy isn’t just about changing policy, it’s about changing lives. Every conversation we have with lawmakers brings us one step closer to improving access to care, advancing research, and ensuring patients are finally seen, heard, and taken seriously.”
Singer-songwriter Shelby Blondell helped close the morning with music and a reminder of why personal stories matter.
“Migraine may look invisible, but to the millions of us who suffer, the pain, unknowns, and stigmas are too familiar of a song,” said Blondell. “I’m proud to stand with fellow advocates, physicians, and friends to be a voice fighting for less suffering and more pain-free days speaking out for headache health.”
More Than a Headache
Migraine and headache disorders affect more than 40 million Americans. They can disrupt work, school, family life, caregiving, mental health, and daily participation. Yet these diseases remain widely misunderstood, underdiagnosed, underfunded, and too often dismissed.
During the program, Verdi shared stories from across the country, including people living with trigeminal neuralgia, chronic migraine, cluster headache, post-traumatic headache, and migraine beginning in childhood.
The stories reflected what so many families know firsthand: headache disorders are not minor inconveniences. They can change the course of a person’s education, career, relationships, finances, and health. They can leave people searching for answers for years. They can affect entire families across generations.
“These diseases affect children, parents, veterans, first responders, workers, students, caregivers, and families in every state,” Verdi said. “They are not niche issues. They are public health issues, disability issues, workforce issues, children’s health issues, veterans’ health issues, women’s health issues, family issues, and equity issues. The HEADACHE Act gives Congress a chance to respond to the scale of these diseases with the seriousness they demand.”
The installation itself helped tell that story.
“Flags for Headache takes your breath away. What begins as a sea of flags becomes a powerful reminder of the millions of people, including veterans, living with headache and migraine disease every day. For too long, these conditions have gone unseen and misunderstood. This installation transforms invisible disease into something impossible to ignore,” said Katy Oakley, Executive Director of the National Headache Foundation.
A National Movement Is Growing
Speak Out for Headache Health was one of the signature events of the 2026 Flags for Headache campaign, a national effort to make migraine and headache disorders visible, elevate patient voices, and build momentum for change.
This year’s campaign includes the Washington, D.C. installation, a New York City-based activation called Headache in the City, local pop-up installations, home lawn installations, 11 public library displays, more than 75 buildings and landmarks lighting purple, and at least 55 state and local proclamations recognizing Migraine and Headache Awareness Month.
The campaign also includes digital storytelling, public education resources, grassroots advocacy, and a national call to action encouraging people to contact their Members of Congress in support of the HEADACHE Act.
As the country approaches the 250th anniversary of the signing of the Declaration of Independence, the location and timing carried special meaning. Thomas Jefferson lived with severe, recurring headaches, including during his years of public service. His story is a reminder that headache disorders have long been part of the American story.
But history should not be an excuse for continued neglect.
“As our country approaches the 250th anniversary of the signing of the Declaration of Independence, we are reminded that headache disorders have long been part of the American story,” Verdi said. “Thomas Jefferson himself lived with severe, recurring headaches. What must change is how seriously these diseases are recognized, researched, treated, and supported today. The people represented by these flags deserve research. They deserve treatment options. They deserve trained specialists. They deserve accommodations. They deserve dignity. They deserve more good days.”
The Work Continues
The HEADACHE Act is an important step forward, but advocates made clear that it is not the finish line.
This movement will continue pushing for additional congressional cosponsors, Senate introduction, improved research investment, greater access to specialty care, better public understanding, and stronger protections for people living with migraine and headache disorders.
The morning ended with a clear message: people living with migraine and headache disorders should not have to fight for recognition alone. They deserve a healthcare system, research agenda, public health response, and policy framework that reflects the reality of their lives.
You can help build momentum by contacting your Members of Congress and urging them to support the HEADACHE Act. Take action here.
The Washington, D.C. Flags for Headache installation remains open at Raoul Wallenberg Mixed Use Field through June 30, 2026.
More information about the campaign is available at FlagsForHeadache.org.
About the Alliance for Headache Disorders Advocacy
The Alliance for Headache Disorders Advocacy is a national advocacy organization leading federal policy and advocacy efforts to improve the lives of people living with migraine and headache disorders.