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Advocacy project, Wash DC.

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As discussed at our conference in September, Clusterbusters will be joining with the Alliance for Headache Disorder Advocacy group during a trip to Washington DC.

The date of Headache on the Hill this year is March 26 and 27th, 2012.

This is the 5th year the Alliance will be going to Dc to fight for improved research on Headache disorders. This is the first year that Clusterbusters will be taking an active role in the project.

The goal this year will be to push for senate hearings on the need for increased funding for headache research. The current budget numbers are pitiful.

Additional information on the Alliance can be found here:

http://www.allianceforheadacheadvocacy.org/

Please consider joining us in DC and raising some....awareness.

A committee has been formed and you will be hearing more details from them soon. They will be co-ordinating the trip.

We are working closely with the Alliance and you will also be able to get additional details on their website (above).

There may be scholarships available to help people with costs so if that is something that might help get you there, stay tuned.

There will be training sessions in DC prior to meeting with the representatives and all appointments are set up in advance by the Alliance. We will be looking for people from as many states as possible.

People will be paired up with others from your state and if possible with doctors/researchers during the meetings.

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

Bobw

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ROAD TRIP  :o

Thanks for the information Bob. Lee Ann and I will try to make it however I'm sure scared to fly after my flight home from Chicago. I guess I had better get back up on that horse sometime and DC would be a great adventure.

Thanks again for all of your selflessness and inspiration.

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DC is road trip-able from FL...  Any carpoolers out there?  I drive a crew cab truck with lots of room...  (oh, and I'll have O2 tanks in the tool box. ha. ha..)

Jeff

Sounds like a good ride to me Jeff. 

Will you be going anywhere near Hiawassee, GA?  You running I-85 or I-95 up to DC?

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I could do 75 to 85 for the right company :)  Might be a good opportunity to visit friends in Knoxville and Chattanooga on the way back.  (I grew up in Chattanooga).

I spent a few vacations as a kid around the Hiawassee.  It's a beautiful drive through there.

Jeff

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Hey Bob,

Please let me know if there's anything I can do to help. 

I've still got some contacts at NIH if you've time to drive out to Bethesda.  The one of best contacts will be the Chief of Protocol.  He oversees all the intermural study protocols conducted in house by the various institutes at NIH and will know who has the most grant money.

If it looks like you'll have time to drive out to Bethesda ~20 minutes from downtown DC, as the trip date gets closer, I'll try to set up a meet.

Take care and keep up the great work.

V/R, Batch

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Thanks very much Batch.

I plan on being there as long as it takes to meet as many people as I can that need to hear from us and can do something to help.

I'll be in touch when this gets a little closer and I have some sort of schedule set.

Thanks again

Bob

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I'm thrilled beyond mention about the possibilities we've got on our horizons!

I'm certain, in our case we won't have the same issues as the "Shrimp on The Treadmill" study did!  But it's an interesting read on how the spin can well, be spun!

http://www.npr.org/2011/08/23/139852035/shrimp-on-a-treadmill-the-politics-of-silly-studies

But none of this is new to any CH sufferer...after all, "It's only a headache.  Take 2 aspirin and go lie down for a bit"

But my favorite spin of all time is still the PubMed publication I came across last year where the author is basically telling the reader to seek out and meet a cluster headache sufferer, thank that person with deep gratitude and a robust handshake or hug because cluster headache sufferers are basically the guinea pigs of mankind whose jobs are to test the pain mankind can endure on an evolutionary basis!

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But my favorite spin of all time is still the PubMed publication I came across last year where the author is basically telling the reader to seek out and meet a cluster headache sufferer, thank that person with deep gratitude and a robust handshake or hug because cluster headache sufferers are basically the guinea pigs of mankind whose jobs are to test the pain mankind can endure on an evolutionary basis!

I don't suppose you have a link to that Cindy?

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PLEASE FOLLOW THE LINK TO SIGN THE PETITION

http://act.allianceforheadacheadvocacy.org/5624/urge-congressional-hearings-on-impact-migraine-headache-disorders/

When signing the petition, please use the comment section to write something specifically about CLUSTER HEADACHES. (the words cluster headaches in all CAPS is GOOD!) Don't worry if you can't come up with something fancy to write - anything is better than nothing at all.

The more people that sign, the more impact we will make.  There are links to "recommend" the page on Facebook, to Tweet, and to email.

PETITION READS AS FOLLOWS:

"We, the undersigned citizens of the United States, hereby petition the Honorable Senators Tom Harkin, Michael Enzi, Bernard Sanders, and Rand Paul; and the Honorable Representatives Fred Upton, Henry Waxman, Joe Pitts, and Frank Pallone, Jr. –

1) To recognize the following findings of fact regarding migraine and other headache disorders:

[ch9632]Chronic headache disorders, including migraine, are among the top 20 causes of disability in the US according to the World Health Organization (WHO).

[ch9632]19% of Americans will experience an attack of some form of migraine this year.

[ch9632] 75% of Americans with episodic migraine are women, predominantly of child-bearing age.

[ch9632]4% of Americans experience 4 hours of headaches per day, at least 15 days per month.

[ch9632]Among veterans of the Iraq/Afghanistan conflicts, 37% of servicemen and 57% of servicewomen reported ongoing migraine if there was a deployment history of concussive injury and any predeployment history of migraine.

[ch9632]Migraine results in an increased risk of cardiovascular disease which has been linked to more than 1500 additional deaths in the US annually.

[ch9632]Headache disorders, including migraine, are responsible for more than $31B in economic costs in the US annually.

[ch9632]The WHO estimates that migraine causes more lost years of healthy life in the US annually than multiple sclerosis, epilepsy, ovarian cancer, and tuberculosis combined...,

[ch9632]...whereas in 2010 the combined NIH research funding on these four disorders ($684M) was more than 45 times greater than that for migraine ($15M).

[ch9632]NIH funding for all research on headache disorders comprised less than 0.05% of the NIH budget in 2010.

[ch9632]Only one innovative drug (sumatriptan), discovered, developed, and priority reviewed specifically for migraine treatment, has been FDA approved in the past 50 years.

[ch9632]A total of only 290 American physicians have received Headache Medicine specialty training and are certified by the United Council for Neurologic Subspecialties.

[ch9632]The US Congress has never held a public hearing devoted to headache disorders.

2) To hold public hearings in Washington, DC, before the Primary Health and Aging Subcommittee of the Senate HELP Committee and/or before the Health Subcommittee of the House Energy & Commerce Committee, prior to the close of the 112th Congress to:

•further the appreciation among the public and within the federal government of the enormous social, economic, and personal burdens imposed by headache disorders.

•explore the roles of the federal government through the Department of Health and Human Services, the Department of Veterans Affairs, and the Department of the Defense, as well as the role of private sector commerce, in promoting research into the causes of, and treatments for, headache disorders.

•understand and suggest remedies for the significant barriers that exist for Americans with headache disorders to obtaining effective treatments as well as adequate access to health care providers with specialty training and expertise in the care for headache disorders."

Thank you!

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Thanks for bringing this petition to our attention - and that's brilliant about the capitalizations!

I just went and signed and commented and I even capitalized my pet peeve H word.  :o

It would be cool to see a bunch more comments with strategic capitalizations.  8-)

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PLEASE FOLLOW THE LINK TO SIGN THE PETITION

[move]Bump                                                      bump                                                        bump[/move]

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Clusterbusters now has a Facebook page!

http://www.facebook.com/#!/pages/Clusterbusters/102168033225406

An easy way to help with our advocacy efforts is to "like" the page and then "share" the link on your FB page.  Perhaps when sharing the FB page link, you could also add  a comment about signing the petition with mention of cluster headaches. 

This D.C. event is an amazing opportunity for all of us to get involved with cluster headache advocacy! 

Even if your unable to travel to D.C., you can still make a HUGE impact by spreading the word or by making a modest financial donation to CB to defray the numerous expenses involved with advocacy efforts.

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How did you do that cool "bump", Jeebs?

I happened upon that top row second from the right button,  "Insert Marquee", that looks like this: marq.jpg and the coolness just flowed from there.  ;D 8-)

Please reply with a marquee in order to confirm that you have mastered today's lesson.  :D ;D

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[move]Oh that rocks       Oh that rocks        Oh that rocks       Oh that rocks        Oh that rocks       Is this getting annoying yet?  ;D       Oh that rocks        Oh that rocks       Oh that rocks        Oh that rocks       Oh that rocks        Oh that rocks       Oh that rocks[/move]

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