2013 HOH Report-CH Super Tuesday-Making History

[1961mom]

2103 Headache on the Hill-Our own “Super Tuesday”

Momentum

True momentum is a confluence of ideas, bodies of dedicated messengers willing to convey those ideas and an appropriate listening audience who are seated in a position to act on those ideas and then do so.

The momentum of the 2013 “Headache on the Hill” event is exciting and ongoing!  For the benefit of new message board members let me share a brief summary of how our involvement with The Alliance for Headache Disorders Advocacy began in 2011.

 

Who is The Alliance?

The Alliance for Headache Disorders Advocacy is comprised of registered nonprofit organizations who are vitally concerned about the health of patients with headache disorders including migraine disease, cluster headaches, chronic daily headache, new daily persistent headache, tension-type headaches. All headache disorders. The AHDA is dedicated to advocacy efforts that can result in better treatment for all headache disorder patients.

http://www.allianceforheadacheadvocacy.org/ '>

http://www.allianceforheadacheadvocacy.org/

History of our involvement

Clusterbusters Board of Directors and President Bob Wold recognized a unique opportunity for the cluster headache patient group to have their voices heard at the congressional level by joining The Alliance for their 5th annual “Headache on the Hill” event.  The preliminary research was completed and the 2012 team came together in a few short months with a dozen Clusterheads taking part in our inaugural presence on The Hill. 

Remarkably, 75% of the 2012 Clusterbuster team returned this year!  Can we call them incumbents now?

Fundraising

Vital to the efforts of the entire team is fundraising.  It’s important to recognize the many levels of support that enabled our patient group to have such a prominent showing at the 2013 event.  The “Headache on the Hill” online fundraiser sought donations to assist those volunteering to travel with us who, with assistance of travel scholarships, were able to participate.  This aspect is crucial to our continued advocacy work. We thank all who donated generously to this fundraiser. 

During the fundraiser we learned that congress had responded positively to one of our 2012 requests and were able to post this encouraging note;

“To anyone wondering if our congress will be listening let alone acting on our behalf, I offer you this message from Dr. Robert Shapiro, President of the Alliance for Headache Disorders Advocacy

"Because of last year's HOH, research funds to study chronic migraine and post-traumatic headaches are now available through the Department of Defense"

Not an easy task in this time of budget cuts.  Everyone that joined us last year should be proud of this accomplishment. “  -Bob Wold

And the dollars rolled in! 

Clusterbusters stats and board positions

The 2013 Clusterbuster Advocacy team increased from 12 members to 19 members.  We were nearly one-third of The Alliance total team members.   We hope the AHDA advocacy team continues to grow in total, but for certain in the Clusterbuster members. 

It's with humble appreciation to physicians, researchers and other headache advocacy groups that AHDA (Alliance for Headache Disorder Advocacy) elected Clusterbusters as the organization to represent cluster headache sufferers nationwide.   The following is Clusterbuster President Bob Wold’s remarks regarding our acceptance into the organization and his positions on the relative boards;

“As a Board member of AHDA and Co-Chair of AHMA (American Headache & Migraine Association - sub organization of ACHE), it's my continued determination to educate the public, spur research, and pursue every possible avenue to find answers and obtain effective medications for our condition.”

Washington D.C.

As the returning Clusterbuster team members arrived in Washington D.C. on Sunday and early Monday morning, they didnÂ’t hesitate to engage the new team members with stories of what to expect during the Monday afternoon training session and the Tuesday meetings at the Capitol.

It’s not easy to take time away from work and family but this is an amazingly dedicated group. Inspired because they know they can make a difference for not only themselves but for hundreds of thousands of families that live with Cluster Headache. 

The Alliance provided detailed training to cover what’s known as our “asks” or “requests”.  The continuity from year to year is held and is often referred to as an ongoing “conversation”.  The professionalism and focus this group exhibits is astounding. The following is a brief outline of the our asks;

1. Recognize disabling headache disorders with a listing in the official Social Security Administration listing of Impairments (Blue Book)

2. Increase the funding from the NIH for research on disabling headache disorders

3. Renew and support funding for research of Chronic Migraines and Traumatic Brain Injuries within the Department of Defense Congressionally Directed Medical Research Program. This funding needs to be reallocated each year.

More of the conversation

In an email sent from The Alliance out-going president, Dr. Robert Shapiro the day after the event we learned this;

“Yesterday was a huge success, thanks to you. It was a real team effort.

The final tally for Hill meetings was 64 people from 28 states visited 129 offices. A great turn-out! Furthermore, these offices included many of the most influential and powerful Members of Congress with regard to NIH and Social Security – the agencies targeted by our asks. My personal experiences, and the early reports that I’ve heard from you, were overwhelmingly positive responses to our asks. This bodes very well, but of course is no guarantee for our success.”

As of today, we know Dr. Shapiro was being cautious in his final remark.  Now let me share the really, really good part….

Making History

Our own John Bebee is the constituent responsible for the influential meeting Dr. Shapiro speaks of in his email!  Together, John, Dr. Shapiro and I spent 50 minutes discussing the various aspects of our “asks” with these influential members of the SSA & NIH. What struck me was how quickly this meeting went from sharing our “asks” to getting down to the brass tacks of a real discussion.  One of the perceived obstacles was the lack of the medical community’s ability to run a diagnostic test capable of positively identifying a primary headache patient.  Dr. Shapiro quickly supplied several ways to overcome these obstacles.  Upon the close of every meeting a customary exchange of business cards takes place.  While exchanging business cards with Tom Klouda, US Senate Finance Committee, Social Security Detail, he said these words:

“Your names will not go down in history; however, I assure you that the results of this meeting will affect the lives of millions.”

Beyond Civics

One truly unforgettable feature for all patients participating is the peer to peer relationship nurtured with the other advocates during the event.  Every participating member is an advocate first. 

Because of the nature of the event, a meaningful dialogue between patient advocates and the many attending top neurologists, leaders of neurology associations such as AAN, NHF and AHS who are just as compassionate about learning from us as they are about pursuing the goals of The Alliance, opens up, is encouraged and sought out.  Whether it’s walking together to share a 30 minute Metro (train) ride from the Radisson to the Capitol, posturing for the group photo on the Capitol steps or grabbing a quick cup of coffee between meetings in the House and Senate buildings, it seemed we were always engaging in a free exchange of educational information.  Inside the meetings, as greater details of our personal stories with clusters unfolded, not only did congressional members or staffers offer empathic compassion, so did leaders of the largest headache foundations in the US.  Many of whom rarely see cluster patients in their own practices. 

Follow up-Maintain a Conversation

Once the event is over and the advocates start departing, there’s a true sense of sadness.  Feelings like you just don’t want this fervor to end (because you know what’s at stake) but the excitement returns as the days pass and you learn of the teams’ successes. 

A vital part of achieving the successes lies within nurturing these new relationships with the other advocates and the representatives we’ve met with.  During the training session this was emphasized over and over again.  Maintain a conversation. 

The cluster patient contingency has received remarkable follow up responses.   John Bebee’s Congressman Max Baucus of Montana writes the very first letter of support!   Next Dr. Shapiro (AHDA outgoing president), received a letter of support from Congressman Peter Welch of Vermont.  Lee Markins Senator Kelly Ayotte has just written her letter of support too.  In all, as of 5/23/13 the AHDA has received 3 letters of support. 

1.  Senator Max Baucus Letter of Support

https://docs.google.com/document/d/1NMsGcBzIEnlHyIJDIqwjxMaTRKK5iuCKzrsQ3TzJ71o/edit?pli=1

2.  Congressman Peter Welch NIH Funding Letter

https://docs.google.com/document/d/1DlXLKv_DU9jRZpUkKKganad1DB3I-PHQeAEdKzhISNg/edit

3.  Senator Kelly Ayotte Support Letter

https://docs.google.com/document/d/1F-tD-Et1nC2nW4QtKG6vYMfQAr3hGi7Aos0Cm6-7P9E/edit

We imagine many more conversations are going on, but wanted to share one example here:

BJ and Becky had the following response from Laura Ringdahl Senior Legislative Assistant to Congressman Tom Reed, NY;

Thank you so much for your email. I have actually been working on a draft letter that Tom had asked me to write regarding Federal research for Headache Disorders after you had come to the office last month. I will have that ready hopefully this week and will be sure to get you a copy. Thanks for following up, hope all is well in NY. Please donÂ’t hesitate to reach back out in the meantime.

Best,

Laura

Jump in!

This isn’t one of those “You had to be there at the beginning to get into the swing of things” events.  In fact, recalling The Alliance training session mantra of “It’s a conversation” is the most fitting way to close the Clusterbusters “Headache on the Hill” progress report.  How fitting to end with a beginning.  With united efforts with other primary headache patient groups, the cluster headache community not only increases our footprint and our voice, but has a real opportunity to also make further distinctions between the two diagnosis’s.  We have all left the “Isolation Phase”, entered into the uplifting and supportive times of the “Connection Phase” and now have a real opportunity participating collectively in the “Action Phase”.   

Sincere Thanks

To the 19 cluster headache advocates, their families (both personal and CH community support families) who’ve started their conversations, sincere thanks goes out to you.  We recognize you gave in multiple ways to be the voice representatives the US Congress heard in April.  Your representation of the entire cluster headache patient group could not have been any better.

Videos of cluster headache experiences were powerful visual aids, so we thank all the cluster headache patients who’ve had the courage to film, upload and share your videos on the web.  These videos contributed immeasurable information to the viewers.

Cindy Reynolds

HOH Event Coordinator

(with edits provided by Bob Wold)

To view this report on our website:

http://clusterbusters.com/?page_id=93

[1961mom]

Jump in

Here's the link to write to your representatives! 

We've provided template letters inside the link and hope you'll use them as examples to write your own personal letter.  We learned the most promising way to ensure a response is handwritten, personal letters.  However, with the sequestration and recent mail threats many representatives have posted notes on their webpages discouraging snail mail.  That's okay too.  Sending a personal note online mentioning the AHDA, our "asks" and your personal story of life with CH is still generating positive responses.  ~Cindy

http://myemail.constantcontact.com/Headache-on-the-Hill-Update---Action-Request.html?soid=1109061736000&aid=W-YyCt2ccfI&fb_action_ids=4740976129859&fb_action_types=og.likes&fb_source=aggregation&fb_aggregation_id=288381481237582

[blueballs]

If you draw a blank when writing said letter...you are not alone.  I did it though, inspite of myself. Just ask and help starting said letter will be available for those with ..challenges...like me....lol ;D

[catlind]

Not only is there immeasurable triumph in the accomplishments of the group as a whole, both AHDA and CB, but anyone who attends might just discover that they experience a personal triumph as well.

Many of you know me from days of old, many of you have never heard of me, but my story is the same as most of you, with one exception.  I used to be extremely active with CH advocacy, until in 2008 while getting a glass of water at my kitchen sink, I fell for no known reason, with no warning - a fall from a height of 5'4" and regained consciousness to the life of a Traumatic Brain Injury patient.  It sidelined my life, and my passion - CH advocacy - but then I learned something that is, as yet, not common knowledge among either patient or practitioners groups - through the DoD program - CDMRP Congressional Directed Medical Research Program - my own doc has been working with the vets at Ft. Bragg who have returned with Post Traumatic headache, as a result of post concussive blasts or traumatic brain injuries - and of those afflicted, nearly all have become chronic migraine and/or chronic CH sufferers.  There's so much we still need to know.  This lit a fire in my soul, and although I have not traveled more than an hours drive on my own since 2008, in April, I drove 7.5 hours, by myself, after much much anxiety and despair, so that I could attend HOH and contribute my personal story to the cause. 

It was my personal triumph - I overcame not only CCH, but PTSD/Post Traumatic HA and the multitude of obstacles and disabilities that a TBI patient suffers from.  I never could have done it without the support of everyone involved, but especially from our esteemed leader and event co-ordinator.  I'm proud to say I was a witness to so many of our contingent achieving such amazing gains and results.  My hats off to you all - I admire your constitution, compassion, commitment, dedication, determination and downright stubborn streaks to ensure that your voices are heard

I add this bit of trivia to this thread, to encourage any and every member to try to attend HOH, and to get involved in every joint venture project that comes our way - with numbers we have great power, and we WILL change the world.

Cat

[MoxieGirl]

I'm a member of 'Cluster Headache Support Group' on FaceBook. There are currently 822 members, and it is growing fast. Like this forum, it has members from all around the world.

I don't want to post the entire report above, but it would be great if someone involved with HOH could write a short-ish summary about what Headache on the Hill is, what it is doing, and how to get involved. I could then post that on the group and perhaps get some more people involved.

At the very least, this might give 822 people some hope in the future.

Here's the link to the FB group, if anyone wants to join.

https://www.facebook.com/groups/CHSupport/

There is also a twitter account, NOT associated with the FB page, but also with a lot of followers. @Clusterheads and people often post using the tag #clusterheadache Posting a link to a summary article would also be seen by a lot of people.

MG

[blueballs]

They delete any mention of clusterbusters...so that would be difficult.

bb

[blueballs]

They believe the use of alternatives is irresponsible. > the admin there has deleted many of my posts and then began using the situation to pitch permanent flashbacks. I am still wondering why they haven't deleted me altogether. I can only post emotional support messages and such. They did let me promote HOH though, but only through the AHDA after much prior discussion through messages. If the AHDA had an update I would post it. Maybe some higher ups could help you or us or whatever..

  I would like to tell all my clusterbuster brothers and sisters to be careful on this site should you go there and try to help with suggestions for treatment... just relaying what happened to me, I have no axe to grind unles it's the one I will use on my head.

bb

[Psiloscribe]

I don't want to post the entire report above, but it would be great if someone involved with HOH could write a short-ish summary about what Headache on the Hill is, what it is doing, and how to get involved. I could then post that on the group and perhaps get some more people involved.

MG

Moxie, I appreciate your desire to spread the word on this. That is what we are trying to do with our Advocacy work.

There are about a dozen FB groups for cluster headaches.

I'm sorry but I dont believe we should edit our work or the reports of our work so that they will conform to the rules of a group that censors what people can be told about clusters, treatments or what we are doing in Advocacy, Education or Research.

The full report is available to everyone from the official Clusterbusters Facebook page as well as other places.

There is also a FB page for the Alliance for Headache Disorders Advocacy.

I am very proud of the work done by Clusterbusters and every cluster headache sufferer and supporter that went to DC and don't think we should have to edit out ANYTHING.

So if you'd like to post a short description of the report or what the Alliance does and then put a link to the full report, I'd be happy to see it and "share" it.

At the very least, this might give 822 people some hope in the future.

MG

There are larger FB groups for clusters.

"Cluster headaches" has almost 2500 members.

We post as much as we can to reach ALL the cluster people out in Facebook land. We try our best to give some hope for a better future to ALL cluster people.

"Like" us on:

https://www.facebook.com/#!/clusterbusters

:-)

[Vickle]

I would just like to offer my unwavering appreciation and respect for all of the advocates who attended HOH or wanted to attend HOH.  There is so much that goes into that event and to know that cluster headaches is being represented and advocated by a group this is so rich in knowledge and passion inspires me to no end.

Thank you all from the bottom of my heart.