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Clusterman59

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Pain free is AWESOME!!

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The ribbon project...
Mar 31^st, 2013 at 4:27pm

Hey Clusterville!!
I have designed a new awareness ribbon to give justice to our disorder which was designed to reflect the striking severe pain of CH.

This is what we are going with and would love to hear your opinions and feed back.about the ribbon...I hope everyone likes it as i have been working on this idea with the lightning bolt for about 6 months now and finally came up with this one with the wonderful colaboration of CH patient and graphic artist Av Damiano and have been getting great feed back from the CH community and from the UK and other countries as well. It has been copyrighted in the U.K. solely to protect it from those who would use the ribbon for personal gain for money and to make sure it is used with the entire CH patient group in mind and that funds generated by use of the ribbon is intended to help research and long overdue awareness of the disease.

I will keep you posted....

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« Last Edit: Jul 30^th, 2015 at 10:05am by Clusterman59 »

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #1 - Mar 31^st, 2013 at 5:07pm Outstanding work Johnny, nicely done sir! Joe
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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #2 - Mar 31^st, 2013 at 7:38pm Very cool, I like it.
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Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #3 - Mar 31^st, 2013 at 8:46pm Nicely done.....thank you!
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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #4 - Apr 1^st, 2013 at 4:02pm Gotta have one of those. Looks great..
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lwatson8 CH.com Junior Offline I Love CH.com! Posts: 28 Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #5 - Apr 2^nd, 2013 at 10:04am It looks great!
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Clusterman59 CH.com Veteran Offline Pain free is AWESOME!! Posts: 237 San Diego, California Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #6 - Apr 4^th, 2013 at 12:02pm Thank you guy's for the great reviews so far!! KEEP EM COMING!.....
Back to top	« Last Edit: Apr 4^th, 2013 at 12:05pm by Clusterman59 » Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever! Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

jess-MTL CH.com Junior Offline Episodic sufferer Posts: 59 x0\|Montreal\|Canada\|\|0\|0\| Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #7 - Apr 11^th, 2013 at 1:10pm It's great!! Gotta get me one of these.
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BBrackeen1 CH.com Newbie Offline I Love CH.com! Posts: 1 Austin, Texas Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #8 - Apr 11^th, 2013 at 3:29pm Wonderful!
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Pfunk CH.com Veteran Offline I love YaBB 1G - SP1! Posts: 216 Summerville,South_Carolina Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #9 - Apr 16^th, 2013 at 11:43pm Very much AWESOME!!! Have to have one or two or... Patrick
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LadyLuv CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1495 Champaign, IL Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #10 - May 14^th, 2013 at 3:04pm LUV IT!!! Y ea Way 2 Go Clusterman59, Way 2 Go...Gimme Gimme... Gotta Have 1, 2 or 3
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Clusterman59

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Pain free is AWESOME!!

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Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!!
Reply #11 - May 15^th, 2013 at 7:21pm

OK Everyone!
Many said that the ribbon package insert with the description was to long so here is a short sweet version. please let me know if you like it. We still have to edit it but this is the general version so as not to lose the attention of the reader... Wink

Thank you for supporting the Cluster Headache Awareness Ribbon Project. Although documentation of the cluster headache patient group dates back to 1641, it would be another hundred years before the founder of the Vienna School of Medicine, Dr. Gerhard van Swieten gave a full description of a case of episodic cluster headache.

Cluster Headaches is a rare severe neurological disorder that effects about 0.1% of the population and effects every continent on the planet. Cluster headaches are associated with the hypothalamus in the brain and is the most painful disorder of any known to man.

"To quote Dr. Peter Goadsby a long time researcher and leader in the field of Cluster Headaches.... More painful than child birth without anesthetic, burns, broken or shattered bones or having a limb amputated without anesthetic" These answers coming directly from thousands of patients who have cluster headaches and have suffered from these other situations.

They have been given the name "Suicide headaches" for a reason and many sufferers have been lost to this horrific condition. The loss of jobs and complete quality of life happen for many sufferers. It truly makes it difficult for them to continue the constant individual powerful battles that are Cluster Headaches.

We as the Cluster Headache patient group desperately need more donations for research and awareness....Thank you...

Insert written by John Fletcher with edits from loving Clusterheads

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« Last Edit: Nov 22^nd, 2013 at 10:34am by Clusterman59 »

Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Louise Barham CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 343 Columbia, South Carolina Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #12 - May 19^th, 2013 at 4:20pm Looks good to me John. Let me know when they are available.
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Clusterman59

CH.com Veteran

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Pain free is AWESOME!!

Posts: 237
San Diego, California
Gender: male

Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!!
Reply #13 - Jun 20^th, 2013 at 9:42pm

Hey All!!
Just an update as to what's going on with the Awareness Ribbon and I am and have been non stop working very hard on this behind the scenes so that's why I haven't posted much lately. I have been designing the website that will launch this project into overdrive and at this point I feel that it is about ready to happen very soon. Thank you all so very much for your patience and understanding as this project was alot more work than I anticipated but is truly a labor of love and respect to all...John

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« Last Edit: Jul 7^th, 2013 at 1:26pm by Clusterman59 »

Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Clusterman59

CH.com Veteran

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Pain free is AWESOME!!

Posts: 237
San Diego, California
Gender: male

Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!!
Reply #14 - Aug 1^st, 2013 at 11:18pm

Hey Everyone!
I wanted to update you all on the ribbon project. It is basically finished! After all this time we expect the ribbons in hand tomorrow.

The donations will go to ClusterBusters and Clusterache Inc both 501(c)(3) non profit organizations dedicated to directly hands on helping cluster headache patients with treatments, research, advocacy, information and awareness. 10% of the net profits will go to the Cluster Headache foundation to help keep the project going.

This website was designed to help cluster headache patients that are in pain and need quick accurate information without the confusion of having to search the internet for long periods of time to find what they are seeking. It is also designed to help doctors, employers, family and friends also the general public understand and be educated about the severity of cluster headaches.

We are not trying to compete with the existing organizations, that is the farthest thing from what we want to do but only trying to help bring the headache community together to be more helpful to all. Also to have quick information available for the patient that is in pain...

My son William and I have worked very hard to make this all possible. William is a college student studying anatomy, health and fitness and is steering towards medicine. After 3 years he is going to get his associates degree this year at the community college then going to San Diego State next year for another 4 years.

He is very interested in Cluster Headaches after seeing me suffer with them all his life and truly wants to help make a difference and has helped me greatly with this project.

The project will go public and be advertized in the next week as soon as we complete the non profit paper work The store is finished but not published yet....

We had some help along the way from great folks like Dr. Peter Goadsby, Bob Wold, Dr.Gene (Rusty) Kallenberg...Head of family medicine for UCSD in San Diego, Darren Johnson (Dj) of Cluster Headaches Dot Com, Pete Batchellor of Clusterache Inc. Cindy Reynolds, and many more wonderful Cluster Headache Advocates!! Thank You all!!

Again I want to thank everyone for their continued patience and understanding.This was a big project which will never stop growing and evolving to be even better and bring more easy to get information to help fight and beat the beast!..John
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« Last Edit: Jul 30^th, 2015 at 9:57am by Clusterman59 »

Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Karla CH.com Alumnus Offline One of Many and Never Alone - Join OUCH Posts: 3837 x1\|Madison WI USA Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #15 - Aug 4^th, 2013 at 5:10am Thank you for what you have done and I love the ribbon!
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Clusterman59 CH.com Veteran Offline Pain free is AWESOME!! Posts: 237 San Diego, California Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #16 - Aug 6^th, 2013 at 5:35am Thank you Karla! The project is finally going to start soon... Everyone has been so patient with this waiting for the project to finally start my son William and I thank you all very much for hanging in there with us....John...
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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #17 - Aug 6^th, 2013 at 11:45am Great, can't wait! (I want to order 2 car magnets! I see right now ordering is for test purposes only. BTW, when I want to check out with PayPal, it comes up as "Celtish Mermaid Jewelry" as the proprietor, just an FYI! )
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Clusterman59

CH.com Veteran

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Pain free is AWESOME!!

Posts: 237
San Diego, California
Gender: male

Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!!
Reply #18 - Aug 7^th, 2013 at 12:58pm

Hey Mellissa
Yeah that will change as I just used my jewelry business paypal account to transfer paypal to this account. I will fix that. Hey all...
I am sooo ready to start this project and thought I could start by the weekend but now my bank is giving me trouble with the name of the business! GEEZE!! What next!
I have run into so many fine details and have been trying so hard to do this and keep everyone positive and happy about what I am trying to do that it has caused many delays. I sincerely apologize for this one! I didn't see this coming and now I may have to change the name ?? Please bare with me as the store and project is basically finished and ready to start. I will deal with this new development as quickly as possible to get this going!...John...

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« Last Edit: Jul 30^th, 2015 at 9:52am by Clusterman59 »

Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Clusterman59 CH.com Veteran Offline Pain free is AWESOME!! Posts: 237 San Diego, California Gender:	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #19 - Aug 25^th, 2013 at 3:20pm Hey All! Here is the new ribbon and ribbon package... The project is about ready to start and I will post as soon as it's ready. For those of you going to the Chicago conference Bob Wold will have the ribbon packages there for you all. Any feed back is appreciated......John
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Jammie73 CH.com Newbie Offline I Love CH.com! Posts: 10	Re: NEW CLUSTER HEADACHE AWARENESS RIBBON!! Reply #20 - Aug 25^th, 2013 at 5:10pm It's awesome!
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Clusterman59

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Pain free is AWESOME!!

Posts: 237
San Diego, California
Gender: male

Re: The Ribbon Project Is FINALLY OPEN
Reply #21 - Sep 7^th, 2013 at 4:31am

Hey Everyone!!
After starting this a year ago with all the different ribbon designs and then about 7 months of very hard work promoting the ribbon to all the orgs,medical institutions, neurology clinics etc. and running posts like this in 8 different support group sites and 4 months of building the new website. It is FINALLY open and so is the ribbon store so be sure to get your ribbon products. The proceeds from the ribbon store will be donated to ClusterBusters and Clusterache Inc. for research, awareness, advocacy, support and information about Cluster Headaches.
New ribbon products will be added on a regular basis so keep checking the store.
My son William and I truly hope you like the new website as it was a total labor of love and respect to all CHers around the world...

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P.S. There is still some minor editing to be done on the site and in the store but is basically finished, however this site was created for cluster headache patients and much of the contents are based on frequently asked questions and needed information for the support groups. This website will continue to grow and evolve as new topics arise and suggestions are added...

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« Last Edit: Jul 30^th, 2015 at 9:48am by Clusterman59 »

Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Clusterman59 CH.com Veteran Offline Pain free is AWESOME!! Posts: 237 San Diego, California Gender:	Re: THE RIBBON PROJECT IS FINALLY OPEN!!! Reply #22 - Sep 8^th, 2013 at 12:32am We have some great products but have only started with about a dozen. We will be adding more on a regular basis...
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Clusterman59 CH.com Veteran Offline Pain free is AWESOME!! Posts: 237 San Diego, California Gender:	Re: THE RIBBON PROJECT IS FINALLY OPEN!!! Reply #23 - Sep 8^th, 2013 at 12:36am Car Magnets... Large 3 1/2" x 8" and Small 4"x2"
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Clusterman59

CH.com Veteran

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Pain free is AWESOME!!

Posts: 237
San Diego, California
Gender: male

Re: THE RIBBON PROJECT IS FINALLY OPEN!!!
Reply #24 - Sep 8^th, 2013 at 12:41am

Hoodies, Tshirts, Polo's etc... with embroidered and printed ribbons...

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A very serious bout of pneumonia that took me 4 months to recover from and a diagnosis of C.O.P.D. & Emphysema changed the course of my life and stopped the ribbon project as it was designed to do.

It will start again at a later date. The Ribbon has helped greatly with awareness for over 2 years now and giving this wonderful very strong group of folks who deal with "The most painful disease known to medical science" A long awaited "Identity" With much respect to every CH patient...John 7/30/2015

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« Last Edit: Jul 30^th, 2015 at 9:46am by Clusterman59 »

Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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