Meeting of the AHDA:

A meeting of the AHDA will be held on Friday June 27 at 10:30 a.m., during the annual scientific meeting of the American Headache Society in Boston. The meeting will be at:

The Marriott Copely Place
The Suffolk, Room
110 Huntington Avenue
Boston, MA 02116
617-236-5800

Anyone who is interested is welcome to attend.

Update on AHDA advocacy efforts:

• Our proposed congressional appropriations report language (below) is due to be discussed ("marked up") later this month in the L-HHS Subcommittees of the Senate and House Appropriations Committees. 12 Representatives and 2 Senators made specific written requests to the L-HHS Subcommittees to include our language in the appropriations reports. While such inclusion would not carry the weight and force of law, it would provide NIH with the sentiment of Congress on this issue and we are told would be taken very seriously by NIH. We are very optimistic that our language, in whole or in part, will be included in the reports.

• To date, over 800 grassroots activists, representing > 75% of congressional districts nationwide, have signed-up at the AHDA website to participate in our advocacy efforts. Their emails this spring were instrumental in obtaining congressional support for our report language.

• The AHDA is now incorporated in Vermont. By-laws have been drafted.

Proposed appropriations report language:

The Committee encourages intensified efforts by the NIH to produce breakthroughs in understanding the causes, prevention, treatment, and eventual cure of headache disorders, including migraine, cluster headache, and chronic daily headache. The Committee strongly urges the NIH to increase research funding for headache disorders by (1) actively soliciting grant applications with Requests for Applications, (2) aggressively encouraging new investigators with career training and transition (K) awards, (3) providing fair peer review by headache scientists of submitted headache research grant applications, and (4) taking any other steps to ensure that vigorous intramural and extramural headache research programs are established within five years that are commensurate with the high population prevalence and enormous economic costs and disability burdens of these disorders. To identify consensus research targets, the Committee further urges the NIH to collaborate with the national and international research community to develop “Headache Disorders Research Benchmarks”, following the successful “Epilepsy Research Benchmarks” initiative as a model. To improve the transparency of NIH research funding allocations, the Committee expects that ‘migraine’, and ‘headache disorders’ will be included henceforth as individual categories in the annual NIH “Estimates of Funding for Various Diseases, Conditions, Research Areas”, as well as in the forthcoming “Research, Condition, and Disease Categorization”. The Committee also expects to be informed of the steps taken to increase research on headache disorders.

House of Representatives "Dear Colleague" Letter:

As a result of Headache on the Hill activities and AHDA activities, including emails sent by patients and other supporters, 12 members of the House sent a "Dear Colleague" letter to Congressmen David R. Obey and James T. Walsh of the House Appropriations Subcommittee on Labor, Health & Human Services, Education and Related Agencies.

Senators Leahy and Sanders also requested that the Appropriations Committee include the same report language on the Senate side.

To see a copy of this letter, including the signature page, please click on the image below:

The Alliance for Headache Disorders Advocacy grew from a September, 2007, meeting and project to address the NIH funding issue described below. That inadequate funding is the first issue that the AHDA has undertaken, and will continue to address.

As the AHDA grows, we will be addressing other important issues as well.

NIH Funding of research into Headache Disorders:

There can be little doubt that the healthcare system in the United States has problems. One of them is the lack of adequate funding for basic research, much of which must be funded by the National Institutes of Health (NIH). Not only is the NIH underfunded by Congress, but research funding is not allocated in a way to best meet the needs of American citizens. Diseases and conditions that affect fewer citizens sometimes receive more funding than those that affect more. Migraine disease and other headache disorders are among those conditions that receive less research funding than other conditions that receive more funding. Addressing this disproportionate funding is the first undertaking of the Alliance for Headache Disorders Advocacy (AHDA).

What’s being done

• Last September, doctors, scientists, and patient advocates went to Congress to plead our case for increased NIH funding for research into migraine and other headache disorders. We called this event “Headache on the Hill.”
• Headache on the Hill made progress, but the necessary increases in NIH funding will not happen overnight and will require persistent advocacy on the part of many people.
• The Alliance for Headache Disorders Advocacy is a new organization made up of doctors, other healthcare professionals, research scientists, and patients just like you. Our current mission is to increase NIH funding for research into headache disorders.
• In 2008, our members emailed their representatives in Congress asking for their help in increasing NIH funding for research.
     

What YOU can do to help

Now:
Look around our site and sign-up for email updates. We will notify you by email when important information is added to our site or action needs to be taken.

Spread the word to your friends and family. You can download our flier and distribute it to friends, family, whomever you know to encourage them to participate in this project. CLICK HERE to download the flier.