About The Headache & Migraine Policy Forum

Mission | Membership | Team

Mission

The mission of the Headache & Migraine Policy Forum is to advance public policies and practices that promote accelerated innovation and improved access to treatments for persons living with headache disorders and migraine disease. 

The Headache & Migraine Policy Forum promotes innovation and access to treatment by:

  • Encouraging the advancement of headache science and innovation

  • Supporting the education of patients, healthcare providers, and other stakeholders about policy issues that impact access to new and existing therapies

  • Highlighting the need for improved, multimodal means of preventing and treating headache and migraine disease

  • Engaging directly with policymakers to promote access to appropriate prevention and treatment options for all patients

THE CHALLENGE

The challenge of migraine disease as an unexplained disease means that it is difficult to treat due to a variety of reasons including scientific, social, financial, and political. The Headache & Migraine Policy Forum seeks to educate policy and decision makers about the burden of migraine disease as a condition as well as the barriers to access of effective treatment options as well as the promotion of emerging therapies.

HMPF seeks to address the following issues important to patients and clinicians:

  • Stigma - Headache disorders are the most prevalent neurological disorders, affecting more than 90% of all Americans. However, the stigma attached to this "unseen pain" means that migraine disease is often misunderstood, or dismissed as just a headache. A study from Thomas Jefferson University in Philadelphia found that persons living with chronic migraine disease experience as much social stigma as people with epilepsy—a disease that produces far more obvious and dramatic symptoms. Part of migraine prevention involves avoiding the sights, smells, situations, and foods that trigger these headaches, further isolating patients from experiences with family, friends, or meaning lost productivity at work.

  • Economic Cost - The US annual direct and indirect economic costs of headache disorders exceed $31 billion and cause more than 1 percent of all disability and 9 percent of all lost labor in the US every year. Migraine disease is the #1 cause of US neurological disability, and #10 cause of all US disability.

  • Lack of Funding - Even with the prevalence of migraine disease and headache disorders, NIH funding for all research on headache disorders was less than 0.08% of the NIH budget ($24M) in 2014, amounting to just 50 cents per person living with migraine disease.

  • Effects Demographic Groups Disproportionately - migraine disease patients are 85% female. Migraine disease also afflicts veterans disproportionately, and may be a sign of other comorbidities such as post-traumatic stress, depression or anxiety. These findings should alert health care providers, especially those affiliated with the military, veteran health care, or women's health care, about the frequent association of migraine disease headaches and other conditions.

Membership

Associate Members

Associate members provide financial support to The Headache & Migraine Policy Forum.  Associate Members are invited to attend HMPF sponsored events. They also serve as a policy resource.  The Forum does not promote any specific product and its independent leadership sets its policy priorities.  

how to Become a member

The Headache & Migraine Policy Forum invites groups focused on headache and migraine disease, chronic pain, and other stakeholders whose members are concerned about the health of patients with headache disorders to submit a request for Forum membership. There is no charge to become a member; however, membership is determined by the HMPF Steering Committee on a monthly basis. We look forward to your active participation. Join below or contact HMPF for more information.

Team

Featured
Lindsay Videnieks – Executive Director
Lindsay Videnieks – Executive Director

Lindsay Videnieks integrates her nearly 20 years of public policy and campaign experience to provide the Headache and Migraine Policy Forum with expert strategic guidance on legislative and issue campaigns. She currently serves as the Executive Director of the Headache & Migraine Policy Forum.

Prior to starting the Headache and Migraine Policy Forum, Lindsay helped lead and secure multiple legislative victories, including landmark trade protection, advances in agriculture policy, and appropriations for education, health care, and municipal clients. She currently provides counsel to voter protection programs nationwide and managed the voter protection Boiler Room operation for the Democratic National Committee in 2016.

A first-generation college graduate, Lindsay received high honors from the University of Maine at Orono with Bachelor of Arts degrees in both political science and English, and in 2022 established the First Gen Honors Fund at UMaine to help support other low-income students. She received her law degree from the Catholic University Columbus School of Law and is admitted to practice law in Maryland where she lives with her husband and three children.

Lindsay Cox – Deputy Executive Director
Lindsay Cox – Deputy Executive Director

Lindsay Cox serves as Deputy Executive Director of the Headache & Migraine Policy Forum, supporting the management and programming of the organization.

Lindsay has extensive nonprofit policy and advocacy experience, including leadership roles at the Hemophilia Federation of America (HFA), where she spearheaded advocacy education and supported federal and state policy initiatives. With a strong background in healthcare research at Georgetown’s Center on Health Insurance Reforms and legislative work in the U.S. Senate and House, Lindsay has a proven track record of driving policy initiatives and achieving impactful legislative outcomes. She also previously served as the Director of Engagement and Strategic Innovation for the New York City Hemophilia Chapter and as the Coalition Manager for the New York State Bleeding Disorders Coalition.

Lindsay holds Bachelor of Arts degrees in Political Science and Philosophy, Politics, and Law from Binghamton University with President’s Honors, and earned her Master of Policy Management from Georgetown University’s McCourt School of Public Policy. A New York native, Lindsay currently resides in Washington, DC.

Karissa Charles – Director of Programming
Karissa Charles – Director of Programming

Karissa Charles serves as Director of Programming of the Headache & Migraine Policy Forum supporting the management and programming of the organization.

Karissa most recently served as an associate director of Outreach and Strategic Partnerships at the American Kidney Fund. In addition, she previously supported the work of the Healthy Brain Initiative at the Alzheimer’s Association. Karissa also has extensive experience developing and managing patient engagement resources and programs for several chronic diseases.

Karissa received a Bachelor of Arts in Political Science from Howard University and a Master of Science in Health Promotion Management from American University. She also obtained her credential as a Certified Health Education Specialist from the National Commission for Health Education Credentialing in April 2020.