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Psiloscribe

Advocacy project, Wash DC.

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Update:  The Alliance for Headache Disorders Advocacy is offering to pay one night of lodging (3/26) for anyone participating in Headache on the Hill. 

We REALLY need cluster headache sufferers and supporters to attend.  The deadline to sign up to participate is February 25, 2012.  The will allow ample time for the Alliance to secure congressional appointments. 

Clusterbusters now has a facebook page where updates will also be posted.  (Please "Like" if you would like to receive updates!)  http://www.facebook.com/pages/Clusterbusters/102168033225406

____________________________________________

Below I copied and pasted the latest CB Facebook post regarding the DC event:

Do you feel we need MORE RESEARCH AND EFFECTIVE TREATMENT OPTIONS for Cluster Headaches?

NOW IS THE TIME TO MAKE YOUR VOICE HEARD!

Please join our advocacy team and the Alliance for Headache Disorders as we attend "Headache on the Hill" in Washington, DC to push for senate hearings on the need for increased funding for headache research.

In order to make the biggest impact, we NEED sufferers and supporters from as many states as possible. The Alliance is generously offering one night of paid hotel lodging to help defray your travel expenses. For additional event and lodging details, email clusterheadache@ymail.com with with "Washington" in the subject line.

This is a phenomenal opportunity to get involved with advocating for yourself and other cluster headache sufferers! If you are unable to attend but wish to financially support our cluster headache advocacy and education efforts, please see our Welcome page for links to donate through Paypal or Causes.

I hope to see a lot of you in DC as we make some Cluster noise!!!

B. Wold

President

Clusterbusters

ps You CAN make a difference! Please don't forget to sign the Alliance's petition and comment specifically about CLUSTER HEADACHES.

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Re: Advocacy project, Wash DC.

Reply #22 - Jan 1st, 2012 at 12:19pm Alert Board Moderator about this Post! Mark & Quote Quote

Did I do it???Did I???Did I???GrinGrinGrin

Did mark & quote work?

lol

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UPDATE!

We need you!  The Alliance and Clusterbusters are building a team to take to Washington D.C. to make an impact. We are looking for people with a story to tell and a passion for making a difference in the lives of headache sufferers.

In addition to the one night of free lodging being offered by the Alliance, a limited number of partial travel sponsorships for the "Headache on the Hill" event are being made available to specifically get a cluster headache patient or support persons "voice" on the team to DC! These sponsorships are through Clusterbusters, with the help and the generosity of O.U.C.H. and individual donors.

If you would like to go to D.C. with us but are in need of financial assistance, please submit the scholarship application asap.  https://adobeformscentral.com/?f=ZFF9Ywmv5I1dbcBSjJJJHg  Deadline to apply is February 17th.   

[move]Pssst...Don't forget to sign the petition!                                   Make your voice heard in D.C.!                                  Jeebs...do you regret showing me this "coolness"???   8-)[/move]

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[move]kaboom wrote on Today at 3:36pm: Jeebs...do you regret showing me this "coolness"???                                                            Regret it? Never! Filled with pride more like it.  ;D [/move]

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The deadline is coming up for registering.

We've had an incredible and inspiring number of people step up to make this trip. Thank you to everyone that is going and helping to make an impact, and a loud statement by people with clusters.

It's one thing for people to come to a conference, full of people with clusters, to meet and discuss our lives. It's something else for us to come out of our hiding places and meet people that don't understand us, and try to change that.

If you were thinking of going but may have thought you'd be on your own, we currently have 16 people planning on going to Washington DC.

A big thank you to KaBoom and 1961Mom for spearheading this trip and working tirelessly to coordinate the trip. This is not an easy task and they've done an outstanding job. You can all be proud to be represented by them.

Thank you both for not only doing all the work, but for doing it in such an impressive way. We are making ourselves known and respected in the world of headache research and advocacy.

We've already had the remarks of two cluster sufferers read into the congressional record this week.

If you were thinking of joining us, we'd be happy to have you come along. I'm buying the first round!!! (Shirley Temples for anyone in cycle lol)

Bob

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The Clusterbuster group and the Alliance for Headache Disorders Advocacy did an AMAZING job advocating on behalf of those with cluster headaches! 

We will be posting a D.C. update soooooon under the new "Advocacy/Conferences tab".  There are some pictures posted on our FB page: http://www.facebook.com/#!/pages/Clusterbusters/102168033225406

(We missed you, Racer.  Hope all is well.)

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You people ROCK!

Looking forward to that update.  8-)

You CH'ers who took on air travel and everything while at risk for CH attacks in order to participate in this REALLY took one (or more) for the team in the most extreme manner. :o Can't possibly thank ya enough for that, but THANK YOU!

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