sixth Headache on the Hill event
will be held on April 8 and 9, 2013.
For more information, see the
HOH 2013 FAQ. and the
HOH 2013 Participant Application.
January 7, 2013:
time for signing thee petition to Congress regarding a Congressional
hearing on the impact of Migraine, cluster headaches, and other
headache disorders has now passed.
you to everyone who supported this initiative!
July 28, 2012:
The petition to Congress
asking them to hold the first ever
Congressional hearing on the impact of Migraine, cluster headaches,
and other headache disorders is still open for signatures. You can help by
signing it AND by encouraging other people to sign it. We've
prepared a one-page flyer that you can download then email to others
or print and hand out.
Download the flyer.
Headache on the
July 20, 2011:
AHDA PRESS RELEASE: Representative
Michele Bachmann Casts Light on the Neglected Burden of Migraine in
June, 2011, Update:
Thanks to everyone who attended
Headache on the Hill 2011.
Below is the group photo taken at
HOH 2011. If you have photos that you took during HOH 2011, please
email them to Teri Robert so we can set up a page of photos from the
February 18, 2011,
This action alert has now
expired. Thank you for your interest and participation.
February, 2011, Update:
To date, the AHDA has organized
three Headache on the Hill events:
- September, 2007: 45
participants from 29 states visited 136 Congressional offices.
- February, 2009: 35
participants from 27 states visited 127 Congressional offices.
- February, 2010: 52
participants from 35 states visited 144 Congressional offices.
The next Headache on the Hill event
is scheduled for May 31 and June 1, 2011.
For more about what the AHDA has
accomplished, please see our
2011, AHDA Overview.
July 22, 2010 Update:
We’re pleased to update you on the
interim progress of 2010 AHDA legislative efforts. Bob Shapiro has
prepared a comprehensive update that can be found on our blog, HeadNotes.
Since our last update, we've seen
some excellent progress.
It's an exciting time.
Please read this update.
There are no
current action Alerts, but you can be prepared for the next one...
YOU can do to help
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. Take special note of the
link in the left column, "What We Can Do ALL the Time."
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.
2009 House of Representatives "Dear Colleague"
As a result of Headache on the Hill and AHDA
activities, including emails sent by patients and other supporters,
11 members of the House of Representatives sent a letter to Chairman
David R. Obey and Ranking Member Todd Tiahrt of the House
Appropriations Subcommittee on Labor, Health, Human Services, and
Education requesting inclusion of language in the appropriations
bill for NIH that supports programmatic changes at NIH requested by
The lead co-signers of this letter were:
Peter Welch of Vermont
Jean Schmidt of Ohio
Nine members of the House joined them by signing the
Raul Grijalva of Arizona
Michael Capuano of Massachusetts
Robert Brady of Pennsylvania
Ed Whitfield of Kentucky
Mary Jo Kilroy of Ohio
Jim Gerlach of Pennsylvania
Dennis Kucinich of Ohio
Rush Holt of New Jersey
Tammy Baldwin of Wisconsin
To see a copy of this letter, including the signature
page, please click on the image below:
We have a basic information
sheet/flier available for download and sharing with colleagues,
family, and friends. To download this PDF document, please click
Headache on the Hill 2009
2/21/09 Update: Registration
for HOH '09 is now closed. We will report on the event soon. Thank
We’re delighted to announce that the second Headache on the Hill (HOH)
advocacy event will be held in Washington, DC on Monday, February
23rd and Tuesday, February 24th 2009. We hope that you can make this
The long-term goal of the Alliance for Headache Disorders Advocacy
is to provide equitable NIH funding for research on headache
disorders. You might ask, why bother going to Congress now, when the
prospects for increased discretionary spending appear to be so dim?
First of all, we intend to make specific programmatic requests of
Congress during HOH that should have lasting benefits but that will
require relatively modest short-term increases in NIH expenditures.
Secondly, this spring is a unique advocacy opportunity: the
“honeymoon” of a new Democratic President and a Democratic Congress
promises action on a broad legislative agenda. Furthermore, a new
NIH Director will be chosen next year and, even in the leanest of
times, NIH initiates some new programs and adjusts its priorities.
Finally, successful advocacy is often a slow iterative process
requiring continuous engagement. We are building on the legislative
progress that began with the first HOH in September 2007 and
resulted in language in the recent US Senate Appropriations
Committee Report strongly urging increased NIH attention to headache
disorders. If we are to realize these necessary changes in NIH
funding, we must continue to make our issue heard before Congress.
We truly hope that you will be able to be join us at HOH. Your
participation can make a difference. Please apply and reserve your
hotel room as soon as you can.
Alliance for Headache Disorders Advocacy
2007 - 2008 Summary
(in reverse chronological
An open meeting of the people
interested in the AHDA was held on
Friday June 27 at 10:30 a.m., during the 50th Annual Scientific meeting
of the American Headache Society in Boston.
Also at 50th Annual Scientific meeting
of the American Headache Society, a letter from Michael O. Leavitt,
Secretary of Health and Human Services was presented. This letter
celebrated the 50th anniversary of the AHS and the 15th anniversary
of MAGNUM. Leavitt also applauded the efforts of the AHDA.
(Click on the letter to see the
full size document.)
Update on AHDA advocacy
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
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"
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
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
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).
We will email updates when
new information is added to our site and when there is action to be
taken. To join our mailing list, please click
Your information will NEVER be shared with anyone else. It will be
used only to send you updates and action alerts on our mission.
Find Us On...
Get the statistics:
Todd J. Schwedt, MD, MSCI, and Robert E. Shapiro,
MD, PhD, wrote "Funding of Research on Headache Disorders by the
National Institutes of Health." This article was published in
Headache. Download a copy
Donate to the AHDA
Please note: Although the AHDA is a nonprofit organization, it is classified as a
lobbying group. Therefore donations are not
- Headache disorders cause more
than 1 percent of all disability and 9 percent of all lost labor
in the US every year.
alone is the 12th most disabling disorder in the
Headache disorders are the
most prevalent neurological disorders, affecting more than
90% of all Americans.
The US annual direct and
indirect economic costs of headache disorders exceed $31
The NIH expended less than $10
million in 2006 towards all research on headache disorders,
comprising less than 0.05 percent of its total budget.
For more headache and
Migraine facts, see our
Headache Disorders Fact Sheet.