Help us out in DC and in the future

[Psiloscribe]

I would like to thank in advance all those attending the DC meetings for the many sacrifices they are making in order to join us in D.C..  This is an amazing opportunity to bring awareness to cluster headaches and encourage more funding to be dedicated for research on our disorder.   In addition to visits with our legislator’s, Clusterbusters board members will also meet with other agencies that influence funding for medical research. 

There is something that those of you that can't make the trip, can do to help make the trip a success.

With our various D.C. and future advocacy efforts in mind, I would like to ask each of you to consider submitting your personal story of how cluster headaches have adversely affected you and your family.   As you are well aware, it simply is not possible for others to understand how truly devastating cluster headaches are by merely relaying clinical facts or presenting data.   Our goal is to personalize our disorder by gathering stories to create a booklet for use to educate others about cluster headaches and the impact they have on our lives.  This will be an ongoing project for Clusterbusters to build on, but is the first opportunity to contribute as an official “kickoff”.

If you would like to have your story considered for print to be used during our visit to Washington, I will need it within the next few days.   If your spouse or other family members would like to write a story about how clusters have impacted their lives, your family life, these would be greatly appreciated as well.

If you choose to contribute, please keep your story to 1,000 words or less.  Aspects we would like to focus on are: 

·         employment

·         family/social life

·         finances

·         Mental health -  thoughts of suicide, depression, anxiety

·         Lack of knowledgeable doctors – inaccurate diagnoses, length of time to be diagnosed

·         Ineffective medications, side effects, cost of medication, insurance not covering meds

These are all areas that different agencies will focus upon. We all know how many areas of life clusters effect. The more areas you touch on, the more agencies we can make a case of need.

By submitting your story, you give Clusterbusters printing and distribution rights.   You may be as anonymous as you like or use your name.  We are always cognizant of the importance of your privacy.

I would ask you to please send your story to the following email address.

clusterheadache@ymail.com

Please do not post it here. Please do not send it to me in IM.

I will need them by next Wednesady. 3/21/2012 for it to be included in the DC booklet.

Its ok if you dont get it done by then. I know it takes time to write a 20 year story and condense it into 1000 words. Stories that come to us after that date will be collected and added to this document as we move forward.

Please put "Cluster Story" in the email header.

Thanks very much everyone.

Bob