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        New Message Board Archives >> Oct-Dec 2003 >> For DJ & Bob P: Special E-MAIL TARGET
        
(Message started by: SommelierCH on Oct 16^th, 2003, 6:16am)

Title: For DJ & Bob P: Special E-MAIL TARGET
Post by SommelierCH on Oct 16^th, 2003, 6:16am

OK. Now that we have our $hit together, WE as a whole can give e-mail support to individuals, if they wish to approach their local media. They won’t be going in alone, we will back them with our stories.

Bob P and DJ have already done that with their local media.

Bob P has been a proponent of reaching out to your own local media…because he’s done it. His “Channel 6, Action News” television interview (see it here: http://pahlow.net/ch/movies.htm ) is STILL, repeat STILL the only television that I have seen on ClusterHeadaches! The fact that Bob P has done it, has been a motivating factor for me.

DJ completes the inspiration for this new, additional line of coordinated attack.

The local ABC affiliate in Wichita does a pretty neat special on Sunday night's called Hatteberg's People. It's from the local reporter (Larry Hatteberg) who does stories about people from Kansas who've made a "special difference" in the world. From quilts to worldwide companies. You'd have to see it to see exactly what it's all about...

Hopefully, something like this could be picked up by the ABC network getting us some good coverage!

Here's the link to the TV station in Wichita. The link to show suggestions is about half way down the page under the e-mail News header. "Hatteberg's People Suggestions".

http://www.kake.com/station/contact

Let’s all let reporter Larry Hatteberg know how we feel about DJ. Post back here to show your support for our fight.

DJ & Bob P, you taught me how to fight for this,
David J.

Title: Re: For DJ & Bob P: Special E-MAIL TARGET
Post by brain_cramps on Oct 16^th, 2003, 6:25am

David: Your link has an extra quote on the end that causes an error.

everyone else: if (when) you get an error on that page, simply remove the quote from the end of the URL.

just a heads-up
grant

Title: Re: For DJ & Bob P: Special E-MAIL TARGET
Post by catlind on Oct 16^th, 2003, 7:22am

Dear Larry,

My name is Cathy Lind, and I live in Omaha Nebraska. It has been brought to my attention that you do a Sunday section on the news about people who have made a special difference. I would like to nominate a very special person to be on your show, Hattenburgs People.

Living in your midst is a very special man. His name is Daren Johnson, affectionately called Deej or DJ by those of us that have grown to know and love him.

DJ serves in the United States Air Force, active duty. In today's age of the war on global terrorism, this in itself is a special thing. DJ has gone above and beyond his air force career though. You see in April of 1999, when he discovered that he had a name for the debilitating headaches that he suffered, he created a website. DJ suffers from cluster headaches. A painful type of headache that is relatively rare, affecting between 0.4 and 1 percent of the population. It has been called suicide headaches because the pain is so intense and pure that many have taken their own lives to escape it. It's cause is currently unknown, although leading research suggests it's caused by a deformity of the hypothalamus.

Rather than accept this terrible diagnosis, and fight it alone, he reached out. He created a website at www.clusterheadaches.com to set up a support system and try to find others in the world that suffered the same as he did. In just 4 short years, and with 5000 members it has become something he could never have imagined. From that first day in April to now, a non profit organization has been created and is moving forward in the world of medicine. O.U.C.H. (Organization for Understanding Cluster Headaches) www.clusterheadaches.org has become a worldwide resource of information on the affliction. There are chapters in the US, UK, Spain, Italy, Germany and others that are starting to form in other countries. As a group we provide support and information to other sufferers and their supporters to help them cope with the syndrome. OUCH works closely with the medical profession to organize research, surveys and education. These sites, and the people that frequent them, and most importantly, our own DJ, have saved many lives, mine included. I was at the end of my rope and ready to give up when I found the site. It literally saved my life.

DJ continues to fight with us even though he no longer experiences the pain of CH. You see, it wasn't enough that this man not only served his country bravely, and had this debilitating affliction, he then found out in June of 2001 that he suffered from an even rarer disease that is deadly. He has Moya Moya disease. Most people would have been crippled with the burden of this. Not DJ. Again, he refused to sit back and let, this time, a deadly illness take his life, literally or in quality. He started www.moyamoya.com to reach out to others who suffer and to help them through patient advocacy and support.

DJ has had two brain surgeries to correct the occlusion of his carotid arteries. His surgeries seem to have ended his CH pain. At present he is alive and well, and still serving active duty in the Air Force in Wichita Kansas. He has survived military tours of duty, cluster headaches, and now moya moya. While his future is a big question mark and very much uncertain, to several thousand people, DJ is a hero and an angel. He has brought hope, friendship, knowledge, validation, power and love to many who have found his support sites and met him.

This man truly has made a special difference, not just to the people of Kansas and the midwest, but to the entire world.

Sincerely,

Cathy Lind
Omaha Nebraska

Title: Re: For DJ & Bob P: Special E-MAIL TARGET
Post by Bob P on Oct 16^th, 2003, 8:59am

Go get 'em gang!

While you're at it, call or e-mail your local news station and ask if they would like to do a segment on "suicide headaches". Usually peaks their interest.

Title: Re: For DJ & Bob P: Special E-MAIL TARGET
Post by vig on Oct 16^th, 2003, 9:08am

my hat's off to DJ...and a salute.
Thanks, bro.

Title: Re: For DJ & Bob P: Special E-MAIL TARGET
Post by SommelierCH on Oct 16^th, 2003, 10:04am

Thanks for the heads up Grant! Sorry about that, I corrected it.

David J.

P.S. Damn good Cat!