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Join Us In Washington DC for HOH 2013

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Hi Everyone!

This years "Headache on the Hill" event webpage is now open!

Last years event was incredible.  The Alliance was thorough in their training that took place the day before the event at the Radisson Hotel and they were thrilled that we were able to send a team of 12 to take part in the event. 

I know I felt a teensy bit nervous, but they were so professional and accommodating that it only took a few moments to get into the rhythm of things.  I videoed a portion of the training.  I'll try to post a link to that tomorrow, but tonight I just wanted to share with you the link to the Washington DC Event before, the official event invitations arrive in tomorrows email.

I would be glad to share with anyone who has questions about how the event went last year or what to expect.  I urge you to consider joining us this year!!


Honestly, the only thing I'm going 2 things I'll be changing this year are;

1.  I will not leave my winter coat on the airplane!

2.  I will take a taxi to the capital (I will not ride subway!  lol)

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  • 4 weeks later...

Thanks to everyone that is either going with us or has supported this event along the way.

We have in excess of 20 clusterheads going to DC in April.

We will strive to be the voice for everyone with clusters and making a case known on several issues.

Bill, we'll be getting updates out to everyone that is going very soon. You and eveyone registered will be hearing from both the Alliance and CB as we set plans.


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If you are bringing someone with you on the trip and they are going to be going with you to visit the offices on the Hill, they MUST be registered with the Alliance so that their names appear on the appointment lists. They will need badges as supplied so please go to the Alliance site and get their names listed A S A P.

Thank you

The Management ;-)

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Headache on the Hill description letter from Dr. Robert Shapiro

I found this letter while reviewing last years emails from Dr. Shapiro, President of The Alliance for Headache Disorders Advocacy.  It's lengthy but well worth the read as a refresher for last years team and an introduction for the new team members.

Cindy 8-)

"Kim tells me that there may be some anxiety about what to expect while visiting Congress and that it may be useful at this time for me to provide some information about how to prepare for HOH. These first time concerns are normal. But I think (I hope) that you will find visiting the offices of your Members of Congress to be exciting, gratifying, and fun. You really will have an opportunity to influence the opinions of the people who set federal policy.

It is necessary to state, however, that there are a few things that visiting Congress isn’t. It isn’t a “March on Washington”. It isn’t an argument. It isn’t an opportunity to say everything that you’ve finally wanted to get off your chest. It is a conversation and maybe even a bit of a sales pitch. Above all, it’s a team effort. The only way to move forward any issue of value before Congress is for a group of people to speak in concert the same message - and to as many members of Congress as possible. On 3/27, we expect in the neighborhood of 65 people from about 35 states to visit about a quarter of the Congressional offices. There will be patients and their families, but there will also be doctors, nurses, psychologists, sociologists, journalists, bloggers, authors, etc. This is the strength in numbers of HOH.

You will be visiting the offices of both of your Senators as well as the Congressman from your district. If you have another address that is in a different congressional district, you may receive an appointment for that office as well. You will usually be visiting offices in pairs, sometimes alone, sometimes in larger groups (especially likely for the SenatorsÂ’ offices). Some of the appointments will include the Members of Congress themselves, but most will be with members of their staff without the Congressman. This is not at all a consolation prize or a problem. The Hill staff are often in their 20Â’s, but they are almost all incredibly smart, very fast learners, and, most importantly, have enormous influence over the opinions of their bosses. It is essential to treat Hill staff as if you are talking to the Senator him/herself.

Your Hill meetings will be much shorter than you expect them to be too. This may seem frustrating since many of you will be coming a great distance and at real expense. Meetings range from 10 mins to 30mins, but are usually on the shorter end of that range. Again, please donÂ’t conclude that if your meeting only lasts for 10 min for that your message wasnÂ’t received or that you did not have an impact. This is simply the standard format for visiting Congress. It holds true for every advocacy group that comes to Washington, which is to say every group that understands the crucial importance of coming to Washington also accepts these constraints.

During your Hill visits you will be conveying the specific legislative “asks” or requests of Congress that we at AHDA are developing for the group this year, and which build on the work of past HOHs. These asks are sometimes technical, such as supporting a piece of legislation or signing a letter of support. You will not be able to make specific legislative asks of your own at HOH. There simply isn’t enough time at these meetings and, again, the close coordination of the asks across the group is a key part of the teamwork of HOH that allows us to have any effectiveness at all in moving forward. One thing that you definitely should not talk about during Hill visits is the use of psilocybin or other hallucinogens in the care of cluster, that is, unless a congressional staffer raises this issue first. Personally, I am very much in support of research in this area, but it cannot be the position of the AHDA at this time to make the case for the use of DEA scheduled substances against federal law. I really am sorry about this but those are our constraints. If you feel that you do not want to come to HOH under these circumstances, I certainly understand, but please let me know now.

This is not to say that you will not have an opportunity to speak your mind at your Hill visits, but it definitely will be shorter than you would like or expect. Specifically, it is very important and effective to explain succinctly what compelled you to come to Washington. For individuals with disabling headache disorders or their family members, this testimony most often takes the form of a story about the illness and its impact. You should be able to tell this story in no more than 3 min maximum. I know this sounds ridiculous, but it is nevertheless all the time that you will likely have, without crowding out the time to explain the asks, which is the real work of the meetings. So you should think carefully about what you want to say about how cluster headache has impacted you, and possibly rehearse the story so that it is 3 mins or less, but doesnÂ’t sound like a speech. From my knowledge of cluster headache, I am sure that your stories will be extraordinary and compelling. You will finally have a chance to tell your stories to people that are in a position to make a difference.

You will receive much more training on how to visit Hill offices. There will be a Webinar with on-line training on 3/21 at 9PM EST (more info to follow soon). There will be further training on site at the Radisson on the afternoon of 3/26, including role-play to allow you to get the feel of the visits. Even if you will be visiting a congressional office on your own on 3/27, you should feel prepared for the meeting by the time the training has been completed. Once you have had your first Hill meeting, the rest will be much easier. YouÂ’ll see.

I really look forward to meeting you all in DC. This is a first and very important contribution that you will be making on behalf of the quarter of a million Americans with cluster headache."

Thanks very much,


Robert E. Shapiro, MD, PhD

Professor of Neurology

University of Vermont College of Medicine

Arnold 2435B, University Health Center

Watch this thread for new posts!!!  Maybe the webinar training???  Not sure, but if you'd like to follow along with your team please mark this thread as a "favorite" and look forward to updates! 

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  • 2 weeks later...

We're only 2 weeks away from our 2nd annual Washington DC Advocacy trip! 

The inaugural learning curve, including the basic logistics of the 2 day event (which can often times be just as stressful as the actual meetings) is over & done....can we all say...."Whew, glad that's history!"  It's been nice to start this years pre-event goodies without the stress of all that going on in the background too.

In early February we created and posted a fundraiser dedicated to the event.  The fundraiser started out with such velocity, I really thought we'd be able to skip the PB&J sack lunches!  lol  Here's where we're at today, as far as donations go.....   


....of course new donations are always welcome  ;)

Last year the AHDA provided a Webinar training session prior to the event.  I wasn't able to log on and participate so when the live training session was held in the hotel lobby the day before the meeting day, I was ready with my smartphone shooting video.  I watched it 20 x's that night!  LOL.  Here's the footage if you'd like to see the training......


....it's posted on my Facebook page, but FB assures me that you don't have to be a FB user to view the footage  :)

If you are a Facebook user, we also created an "Event" and invited the world, lol.  We made it "public" meaning anyone in the world could share the event with anyone else in the world.  To me, seeing the responses come in and the posts people have shared on the event page has been one of the sweetest pleasures of this years event.  Many are going "in spirit" this year!  My hope is that as we proceed into the future, these "in spirit" people will become participants.  We have nearly 100, it could happen!  Here's the event page.  Please click on "going" and post "in spirit" in the comments.


The 2013 HOH Clusterbuster team is 20 strong!  Here's the map of the team members and where they're from.  To view a list of names click on the"View" tab then choose "List" from the drop down menu.  It's not the default view of the application, but it's a great way to see the team at-a-glance.  I've included the congressional HELP committee members too.  They're the black markers.  Go to the bottom (under the map) to find the map legend.  Uncheck HELP committee to view the team (red markers).


For the next 2 weeks I plan to hone in on my message so that it's memorable, effective and fun too.  Last year, several members of our team met with Legislative Assistants who are 20 somethings and boy are they sharp! 

I'm going to start one more topic in the Advocacy area because I'd really like to hear what you guys would say to your congressional reps if you were going!  And I mean anything!!!!  you never know if what you have to share is something that triggers what I like to call an "Aha moment".  A key ingredient or thought I could include in my message??? 

It's so exciting to watch this thing grow!  I can envision a day when the disconnect between need and funding are a thing of the past. 


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