Migraine Blog

Headache On the Hill III (HOH3) Returns To Washington, DC Monday!

 

Senator Jim Webb (D-VA) [R] with MAGNUM's Michael John Coleman [L] and Staffer[C]. © MAGNUM, Inc. 2009

Migraine Disease & Headache Disorder Doctors, Scientific Researchers, & Public Health Advocates Descend Upon DC for REAL Healthcare Improvement on the Hill

Photo By Steve Novenger © MAGNUM, Inc. 2007

WASHINGTON, DC (MAGNUM)February 12^th, 2010--(Updated February 19^th,2009)—Dozens and dozens of the nation’s top Migraine disease and headache disorder doctors, scientific researchers, and public health advocates are descending upon our city, the nation’s capital for Headache On the Hill III.  MAGNUM welcomes all with open arms as the work they are about to do builds on earlier public advocacy efforts lead at the core by the gifted Dr. Robert Shapiro, PhD, Director, Headache Clinic, Professor of Neurology of the Vermont University seen pictured above with MAGNUM’s Terri Miller Burchfield.

So Headache on the Hill III is coming to Washington, DC next week? So what is“Headache On the Hill” you ask?   Headache On the Hill (HOH) is an advocacy event scheduled for February 22^rd and 23^th, 2010 in Washington, DC. HOH is an initiative of the Alliance for Headache Disorders Advocacy ( http://www.allianceforheadacheadvocacy.org/ ).

What are the goals of HOH you ask? Well we are glad you ask, the primary goal of HOH 2010 is to educate members of Congress and their staffs about federal under-funding of headache disorders research and to urge remedies. The specific legislative goals of HOH 2010 will be outlined at time of the event.

We knew, we know—goals for NGO’s are all well and fine but in the end what have past HOH events achieved you ask? Well MAGNUM is proud to be at the center of a truly diverse group of non-government organization and groups who working together without bickering of fighting has produced tangible positive outcomes such as; two previous HOH events led to inclusion of language in congressional appropriations bills supporting increased NIH attention to research on headache disorders. These actions resulted in the NIH committing, for the first time, to report their annual expenditures on headache disorders research, and to hold a national conference on future research directions. The most recent HOH, in February 2009, included 35 participants from 27 states who visited 127 congressional offices.

 
Global leader in all things Migraine and headaches Dr. Robert Shapiro lecturing a full house during the first Headache On the Hill in 2007.  With his expert leadership MAGNUM is confident the HOH project will continue to see gains for the Migraineurs and head pain sufferer. 

 

We knew, we know—goals for NGO’s are all well and fine but in the end what have past HOH events achieved you ask?Well MAGNUM is proud to be at the center of a truly diverse group of non-government organization and groups who working together without bickering of fighting has produced tangible positive outcomes such as; two previous HOH events led to inclusion of language in congressional appropriations bills supporting increased NIH attention to research on headache disorders. These actions resulted in the NIH committing, for the first time, to report their annual expenditures on headache disorders research, and to hold a national conference on future research directions. The most recent HOH, in February 2009, included 35 participants from 27 states who visited 127 congressional offices.

  
 Nationally renown Migraine and headache expert Elizabeth Loder, M.D., Associate Professor of Neurology, Brigham and Women's Hospital, seen here in Arlington, Virginia during last years HOH2.  She currently divides her time between her position as a clinical editor at the BMJ and duties as the Chief of the Division of Headache and Pain in the Department of Neurology at the Brigham and Women's/Faulkner Hospitals in Boston. She is an Associate Professor of Neurology at Harvard Medical School and we are lucky to have her supporting Migraineurs everywhere as she brings a passion to attacking Migraine disease and headache disorders which is refreshing. HOH is designed to bring top Migraine experts together with top patient advocates, as you can see it does this well. 

 

 

Yea yea--the doctors get invited but what about those of us who understand disease best, we citizen suffers or patient advocates.  Do they get to have a voice in your HOH event they ask?  We hear you when we are asked “Are only doctors or  invited to participate in HOH”United States citizen clinical providers (e.g. physicians, nurses, psychologists, therapists, etc.), research scientists, and lay advocacy leaders with a specialty interest in headache disorders are urgedto come to Washington, DC and participate in HOH. NOTE: that any US citizen is legally permitted to advocate for issues before Congress, however one cannot use federal dollars (i.e. NIH grant funds) to pay for activities, including travel expenses, intended to change federal spending.

 
World leading Migraine expert Joel R. Saper, M.D., F.A.C.P., F.A.A.N.. Dr. Joel Saper is Founder and Director of the Michigan Headache and Neurological Institute (MHNI).  He can be seen here educating the HOH1 in 2007 volunteers so they may give their best and not waste the Senator or Congressperson's time.  Something which goes a long way in the art of lobbing. In addition the gifted Dr. Saper is past President of the American Association for the Study of Headache, past Chairman of the American Council for Headache Education, and an educator in the American Academy of Neurology, American Academy of Pain Medicine, American Headache Society, and the American Pain Society. He is also a Clinical Professor of Medicine (Neurology) at Michigan State University.

 

We bet you are wondering why is there a large turnout of participants being urged for HOH III?   Well constituent opinions influence the behavior of Members of Congress. Access to scheduled meetings with Members of Congress and their staffs is typically restricted to their congressional district constituents. Therefore, it is optimal to have participation at HOH by individuals from as many congressional districts as possible, but particularly individuals from those from districts represented by Members of Congress with special influence over NIH authorization or appropriations. Furthermore, the success of issues-oriented congressional advocacy is often dependent on the “share of voice” representing that issue: the more participants, the greater the momentum for change. 

MAGNUM, The National Migraine Association's Headache On the Hill 1st Ever Reception at their Headquarters Office in the DC area. More Photos By Steve Novenger © MAGNUM, Inc. 2007

Whoever said TARP was paying for this is not taking their medication!  But for those who would want to know who is paying for HOH read on.  The member organizations of the Alliance for Headache Disorders Advocacy and several generous donors have contributed resources to cover administrative expenses for HOH and defray some hotel costs for participants. We recognize that participation in HOH represents a very large request both in terms of direct travel expenses and in lost work time. We greatly appreciate the generosity of HOH participants.

 

As for next week’s Headache On the Hill 3 Agenda:

 

From 2PM until 6PM on February 22, 2010, we will hold an issues briefing and advocacy training session at the Radisson Hotel Reagan National Airport (2020 Jefferson Davis Hwy, Arlington, VA, 22202 http://www.radisson.com/arlingtonva).

From 8AM until 6PM on February 23, 2010, HOH participants will visit the offices of their congressional delegations on Capitol Hill. We will make appointments with the offices of at least one congressman and two senators for each HOH participant.

 

For more information on HEADACHE ON THE HILL THREE please visit our partner and friends at the Alliance for Headache Disorders Advocacy ( http://www.allianceforheadacheadvocacy.org/ ).

MAGNUM will be covering the Third Headache On the Hill so stay tuned. 

 

As for about half of those of you who have missed receiving MigraineBlog articles in December and January we have identified the technical issue and repaired it.  We may republish some of the articles again over the next few weeks so they will achieve into the system.

 

 

 

 

MAGNUM Discusses Migraines and Inflammation on Legacy for Life

 
Migraines and Inflammation

This Tuesday-December 1

 MAGNUM Joins Dr. Hellen Greenblatt Discusses Migraines and Inflammation on Legacy for Life 

WASHINGTON, DC (MAGNUM) November 27th, 2009--(Updated November 30th 2009)-– Listen in as Founder of the National Migraine Association,  Michael John Coleman, and Dr. Hellen Greenblatt, Chief Science Officer of Legacy for Life, discuss Migraines and the role of inflammation in Migraine pain.

Following her discussion with Mr. Coleman, Dr. Greenblatt will be joined by guests that will relate their personal stories as to how i26, the gold standard of immune supplements, goes beyond nutrition to help heal their bodies and minds.

CALL DETAILS:

 

DATE:Tuesday, December 1, 2009
TIME:9:00pm ET/6:00pm PT
PHONE: 507.726.3244
ACCESS CODE: 55031#

(lines open 5 minutes to the hour)

According to the Centers for Disease Control, (CDC) Migraines which are characterized by excruciating, disabling pains in the head and eyes, and often accompanied by extreme sensitivity to light and sound, nausea and vomiting, have no known cause, treatment, or cure.

Although the cause of Migraine pain is controversial, excessive inflammation has been implicated. For example a report from the The Journal Neurology, reports that when patients with eye pain are treated for eye inflammation they often find that triggering of a full-blown Migraine attack is prevented and/or Migraine pain is relieved.

Also, the American Academy of Neurology has reported that on average, individuals between the ages of 20 and 55, with larger waistlines are more likely to have https://www.paypal.com/us/cgi-bin/webscr?cmd=_flow&SESSION=tZeSe3NIseEHLJ4nLIkYvZkpdAkBi1upwax3mv7FGNDI_zJkLyGT_85Z1YK&dispatch=50a222a57771920b6a3d7b606239e4d529b525e0b7e69bf0224adecfb0124e9b833248354cf50881e4ea372b2a42d76305e03018dc2a2bc7igraine attacks, than people of the same age who have smaller waistlines.  [Regular listeners know that belly fat manufactures inflammatory molecules.]

As a long-time sufferer of Migraines, Michael John Coleman founded MAGNUM, the National Migraine Association with the help of Congressional staffer Ms. Terri Miller (Burchfield) nearly twenty years ago.  He identified a need for a non-governmental organization (NGO) to address migraines as a disease.  [ http://www.migraines.org ;donations would be appreciated.*]

Listen in as Founder of the MAGNUM, The National Migraine Association,  Michael John Coleman, and Dr. Hellen Greenblatt, Chief Science Officer of Legacy for Life, discuss Migraines and the role of inflammation in Migraine pain.

Following her discussion with Director Coleman, Dr. Hellen will be joined by guests that will relate their personal stories as to how i26, the gold standard of immune supplements, goes beyond nutrition to help heal their bodies and minds.

 

AGAIN-

ALL DETAILS:

DATE:Tuesday, December 1, 2009
TIME:9:00pm ET/6:00pm PT
PHONE: 507.726.3244
ACCESS CODE: 55031#

(lines open 5 minutes to the hour)

 

If you miss any part of this call, it will be available at Legacy's 24 hour Conference Call playback number: (507) 726-3711 [no access code needed] Option #2, selection 3.  Past Informational Calls can be heard at the same number.  Just choose from among selections 1-9.

 

*This information is provided as a public service only; Legacy has no affiliation with this group.

 

Hellen Greenblatt, Ph.D., Chief Science Officer of Legacy for Life

 

 

Congress Squeaks By Health Care Act In Dead of Night On a Rare Weekend Midnight Vote!

Longtime MAGNUM supporter and healthcare leader Congressman James P. Moran (D-VA)seen on the right live Saturday night bringing in the last few votes after the Democrats just breached the 218 votes to carry HR 3962 to the 215 Republican & Democrat votes minutes before midnight Saturday.

WASHINGTON, DC (MAGNUM) November 7th, 2009--(Updated November 14th 2009)-– The U.S. House of Representatives squeaks by "Affordable Health Care for America Act" [H.R. 3962] in the dead of night on a rare weekend midnight vote.

This historic vote of a narrow nail biting 220 to 215 approved the House bill that will expand coverage to nearly* all Americans and stop unpopular insurance policies such as refusing to cover people with pre-existing medical conditions such as Migraine disease just for starters.

If the Senate manages to also pass the "Affordable Health Care for America Act" it will lead to the largest changes in the U.S. healthcare system. Government economists estimate the $2.5 trillion dollars healthcare system which accounts for one sixth of the U.S. economy, since the creation of the Medicare government health program for the elderly and the disabled in 1965.

The long public fight over the President’s top domestic priority now comes to bare on the U.S. Senate, a place where clever abortion amendments will not be an option to get past a pesky block of Senators in the eleventh hour. Work on the Senate version has stalled for weeks as troubled Senate Democratic leader Harry Reid searches for an approach that can somehow win those 60 votes he needs.　

Judging by Tuesday’s election day results sans spin, the President healthcare bill was not a winner. Many pundits speculate that is why we where treated to such a midnight session on Capitol Hill. Regardless, even if by excellent skill and leadership of Senate Leader Harry Reid he gets the Senate version passed, then the real fun begins! For those of you not used to following Congressional affairs this close, No, the bill is NOT ready to go to President Obama’s desk for his signature!

Then the differences between the Senate and House bills eventually MUST be reconciled, and a final bill is made out of the two, and here is the interesting part for those new to all of this, it will then have to get passed again by the Congress and the Senate both again, and once that has happened then it finally go to President Barack Obama for his historic signature.

It was Pelosi’s brinkmanship to get the votes for the overall bill, she would have to allow Democrats against abortion rights, led by Rep. Bart Stupak (D-Mich.),the chance to offer an amendment that would essentially bar insurance companies in the health insurance exchange from covering abortion. Congressman Stupak has been threatening for weeks to block "Affordable Health Care for America Act" if he did not have the chance to offer his amendment and said he had around 40 members who would vote with him. Considering H.R. 3962 only pasted by two votes one has to wonder if the "Affordable Health Care for America Act" will survive after it is reconciled in conference and it comes back for the final bill votes? The second time around the Stupak Amendment ironicly might be what cause another group of Congressmen to vote against the final version of the healthcare bill.

MAGNUM EXECUTIVE DIRECTOR DISCUSSES CONTROVERSIAL MIGRAINE SURGERY ON MPBN.NET RADIO

WASHINGTON, DC—(THURSDAY SEPTEMBER 17th, 2009)—Weekdays at 5:30 pm Maine’s only daily statewide radio news program will be interviewing MAGNUM, The National Migraine Association Executive Director and MAGNUM Co-Founder Michael John Coleman. This radio station was kind enough to take on our favorite subject, and that of Cindy McCain, (recent addition to the national Migraine advocates) Migraine disease!  Today MAGNUM was fortunate to enjoy a pleasant interview by reporter Anne Ravana who wanted to discuss a unique Migraine operation which required surgical deactivation of three common Migraine disease trigger areas through what many in the medical community consider a controversial surgery, pioneered by Migraine expert Dr. Bahman Guyuron, a plastic surgeon.

MPBN.NET Radio has an award-winning news staff which brings you the latest news from across Maine, as well as in-depth reports on the state’s most pressing issues.

To listen to the entire show, please select a program on the website here. Please note: the show is posted just after PM each weekday, and should be available to you by 6:PM. You may need to refresh your browser.  View recent news stories. MPBN will be archieving this broadcast and MigraineBlog will set up linka  such a time when they set that up so readers who missed todays broascast can catch it later!

                

CINDY McCAIN, LONGTIME MIGRAINEUR, TO KEYNOTE ANNUAL MEETING OF THE INTERNATIONAL HEADACHE SOCIETY IN PHILY

Will Press For More Research Funding and More Public Awareness of the Pain and Suffering Endured By 36 Million American Migraine Sufferers

PHILADELPHIA--(TUESDAY SEPTEMBER 8th, 2009)—During last year’s election MAGNUM had the reported on some troubling facts regarding Republican Presidential candidate John McCain’s wife Cindy McCain and how she was being berated by members of the national press, even by the venerable New York Times for having succumbed to her Migraine disease among her other physically frailties.  We seem to have to come to a place in our culture where it is tolerated by some to be openly abusive to those with disabilities, as long as those disabilities do not confront the eye of the bystander.  Leaving those of us with non-visual diseases and conditions easy prey for those of weak moral character to make their ignorant attacks. Which is just an other reason why Migraine disease awareness is critical, so we are thrilled to tell you Cindy McCain is joining our fight tomorrow by opening a major Migraine medical event called IHS Congress.

 

To that fact, Cindy McCain, wife of U.S. Senator John McCain, will deliver the keynote address before a global audience of neurologists and Migraine treatment specialists attending the 14th Congress of the International Headache Society (IHS) , hosted by American Headache Society (AHS) September 10-13, 2009 in Philadelphia. [Mrs. McCain’s speech will be at 4 pm, Thursday, September 10 at the Philadelphia Conference Center.]

 

Mrs. McCain has suffered with extremely severe Migraines for the last 15 years, some disabling enough to require hospitalization.  She is one of more than an estimate 36 million Americans with Migraine.

“Cindy McCain has dedicated her life to making a better life for people around the world,” said Fred D. Sheftell, M.D., president of the AHS.  “We are honored and thrilled that someone with her prominence and credibility is willing to stand up and be counted in this silent disease. She is a true hero to Migraine sufferers everywhere.”   

  

 

In her keynote, Mrs. McCain will call on Migraine specialists to press for more research funding for the diagnosis and treatment of Migraine and to work with political leaders to raise public awareness of the enormous toll Migraine takes on sufferers.

 

 

“Migraine is a real disease,” she says. “I am one of the lucky ones who have been diagnosed but still I struggle with the pain and tremendous debilitation of this disease.  So many people never get diagnosed or receive effective treatment.”

Mrs. McCain experienced Migraine attacks frequently during her husband’s political campaigns. Ironically, it is not stress and pressure that bring on the Migraines – they seem to be triggered by something sensory: bright lights, sounds, or strong odors.

 “My family sometimes doesn’t know what to do when I get one of these attacks,”
 she says. “They try to be sympathetic, but the truth is I am absent from my life and theirs for 24 hours or more during and after an attack.” 

 

For many years, no doctor told her she had a real disease called Migraine. “I was so frustrated and in terrible pain. My family doctors and even neurologists did not take it or me seriously and did not prescribe proper treatments that could help me keep it under control.”

 

Cindy McCain to Deliver Keynote at Migraine Conference

 

How fitting September is Pain Awareness Month to have Mrs. Cindy McCain lead her voice to that of Migraine disease awareness as MAGNUM is still working with Congress to declare September as Migraine Awareness Month as well.  Mrs. McCain believes more research is essential. “I am astonished by the lack of progress in the field and the dearth of medical advances. I mean, there are no specific preventives, and not enough effective treatments,” she notes.

“My mission,” she says, “is to press hard for more awareness and respect for Migraine sufferers in the medical community and in our society and more scientific progress in Migraine.”

 

 She has a special place in her mission and heart for America’s military veterans.

“So many soldiers in combat zones suffer with Migraines,” she notes. “More than 36% of Iraq war veterans return home with disabling migraine. That’s about three times more prevalent than in the general population,” she says. “No one knows exactly why, but we still need to dig to get to the bottom of this for them and for everyone who suffers with this debilitating disease.”

 

           Mrs. McCain will deliver a three-point message to the assembled neurologists and Migraine researchers at AHS on September 10, 2009:

• Improve the lives of your patients with Migraine by listening, staying aware and understanding how disabling this disease can be.

• Work with political leaders to recognize the public health importance of Migraine and exploit a “brain trust” that increases funding to facilitate integrated multidisciplinary and interdisciplinary research networks that enable advances and insights to flow back and forth from the lab to the practicing physician and back again.

• Create a public awareness campaign that raises awareness of this disease for what it is and the enormous physical, medical and emotional toll it takes on sufferers.

Migraineurs can tell you horror stories of how ‘people’ misinterpret artifacts created by the disease for a host of incorrect assumptions.  In addition, there are those of you reading this who have struggled as an adult with Migraine attempting to pursue life just as a ‘Normal person’ does.  (How is that going for you?) All the time we are pushing ourselves way beyond human condition can endure and of course no one out there but select intimate friends or loved ones have a clue.  Sadly in some cases even family and loves ones can fail to ‘get it’ and the struggle in those cases can lead to tragic results.  Well after Thursday night that might all begin to change after some of the most talented Migraine medical and scientific experts get to listen to new Migraine advocate Cindy McCain tell our story to them for us, Migraineurs everywhere thank you Mrs. McCain.  Or should we have asked you to give them hell?

 

About the American Migraine Foundation

The American Migraine Foundation is a non-profit foundation supported by the American Headache Society and generous donors dedicated to the advancement of migraine research. The mission of this newly formed foundation is to support innovative research that will lead to improvement in the lives of those who suffer from Migraine and other disabling headaches. (http://www.americanmigrainefoundation.org/)

 

 

 

About the International Headache Society

IHS is an international professional organization with more than 1,000 members working with others for the benefit of people affected by headache disorders. The purpose of IHS is to advance headache science, education, and management, and promote headache awareness worldwide. Its website is www.i-h-s.org.

 

 

 

About the MAGNUM, National Migraine Association

MAGNUM: Migraine Awareness Group: A National Understanding for Migraineurs, was created to bring public awareness utilizing the electronic, print and artistic mediums, to the fact that Migraine is a true biologic neurological disease, to assist Migraine sufferers, their families, and coworkers, and to help improve the quality of life of Migraine sufferers worldwide. Its website is www.migraines.org and their online publication is www.MigraineBlog.com.

 

Susan Moeller Denny Honored by MAGNUM for Top Volunteer Service

                            © Michael John Coleman 2009

What could be more fitting than seeing Susan elegantly resting there sitting atop of one of Rome, Italy’s seven famous hills as she assists Director Michael John Coleman shoot fine art images of the Roman country-side. Oh, yeas that is the Vatican off in the distance, with the dome of Saint Peter's Basilica rising in the sky behind and to the right of Susan’s fiery red hair.  In time many of these images Susan assisted with would later be used in a MAGNUM Migraine Awareness Art Exhibit at the Italian Embassy’s Cultural Arts Center in Georgetown in honor of the World Headache Alliance (WHA). 

 

WASHINGTON, DC—MONDAY, AUGUST 31th, 2009—It is hard, not just for MAGNUM, but for all small NGOs (non-government organizations) to find and hold on to top volunteer personnel.   Which is why today we at the Migraine Awareness Group [a National Understanding for Migraineurs] want to make special SHOUT OUT! to our own very special Ms. Susan Moeller Denny, MAGNUM's Information Service Director!  Thank you for over a decade of support, advice, and lots and lots of just plain hard work for MAGNUM!

 

Come back next week and learn more about this amazing Health Advocate and see how she & MAGNUM have worked to improve the quality of life for the Migraineur.  Just keep in mind sometimes it does not take one to know one.  More on that in the up coming article.

 

For more on Migraine disease please visit www.migraines.org.