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Title: My Sincerest Apologies... Post by Donna_D. on Nov 4th, 2003, 3:34am I intended to post this message several days ago. But, as many of you with kids know, sometimes we get sidetracked (ie. Halloween and grandparents in 3 different cities). My sincerest apologies to all of you here in the Supporter's Corner. I was not intentionally excluding you, only tending to my kids. Now, with that said. On to business. The O.U.C.H. newsletter is not just for the sufferers of CH. It is also for all those who have to "put up with it all": Supporters! Your voices need to be heard!! . I am looking for persons interested in writing articles from a supporters point of view. Anyone who is interested please contact me at smileyone1968@yahoo.com. Even if you do not want to write a story, any story ideas or suggestions are greatly appreciated. Thank you for your patience. I hope my "late arrival" here on this board will be forgiven. Donna Delacerda Editor O.U.C.H. Newsletter |
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Title: Re: My Sincerest Apologies... Post by Margi on Nov 4th, 2003, 10:24am Hi Donna Actually, this was done in the last newsletter. I believe it's still online somewhere. Ted Marcus was our last editor and he did a beautiful story on Ree and what it means to be a supporter. It was a great article and Ree told her story very well. I believe, actually, that there are supporter stories in past issues as well. Hope this helps. Margi |
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Title: Re: My Sincerest Apologies... Post by Donna_D. on Nov 4th, 2003, 12:59pm Thank you Margi. I also read the story in the last newsletter. I agree, beautiful job! I want to continue to recognize our supporters. From everything I have read (both here and on the OUCH boards) you folks really have it together. I saw a post about responding to 71 mails. I think it is important for everyone to know what a fantastic (and sometimes thankless) job you all do! Perhaps you could jot down a few things that the supporter area handles. New things in the works, etc. I want to make sure that this newsletter is an accurate representation of the entire CH community. It cannot be accurate without recognizing our supporters hard work and dedication. Thank You!! Donna D. |
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Title: Re: My Sincerest Apologies... Post by Margi on Nov 4th, 2003, 1:30pm OK, Donna - I know you're new here, so I think you may be getting the OUCH Family Services Team mixed up with the ch.com Supporters' Forum. Understandable confusion, I know (and a few of the same players in both places)- but just so you know, the Family Services Team is a group we assembled a few years ago to do "behind the scenes" work with supporters who would rather not discuss things in public, like folks do here on DJ's message boards. A list of our team members can be found over at OUCH and although we don't hold regular "meetings" or produce reports, we do regularily check and answer our "clusterbuds" email and often email and counsel supporters that we see holding on to the last bit of their rope, either from here on DJ's board or from the Guest Book. The posts that you see here in this forum are just from the hearts of people, nothing formal or organized, quite often coming from sufferers too. As to new things going on with supporters.....um, well, I have new socks on today.....does that count? ;) just joking with you. Not much new to report, I'm afraid - supporting is what it is. Tough to write about new things we're trying because really, nothing works to end cluster pain, right? Maybe you could give the Family Services Team a plug, though, in the newsletter. The link to our pages over at OUCH is at the bottom on my post here. Personally, I think you'd be better to profile another supporter, like Ted did in the last issue. I'd suggest Jackie Warrior. Ree is a supporter of her husband who is episodic. Jackie supports Blake, who is chronic. WHOLE different ball game, if you ask me. I know Jackie will probably shoot me for this and....she CAN too - the woman has guns. :o But I think that would be a better thing to do, Donna - interview another supporter. Because to detail what we "do" is kind of like asking a mom what she does during the course of her day and what new things she's trying. Know what I mean? We just....do what we do. |
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Title: Re: My Sincerest Apologies... Post by Donna_D. on Nov 4th, 2003, 2:25pm Thank you Margi! That is exactly the information I have been searching for!! You hit the nail right on the head--I am new and still learning about all the in's and out's of O.U.C.H. and CH.com. I appreciate all of the information and I promise not to be too much of a pest! After I started this thread I read Jackie's post (dated 09/17 I believe) and had the same thought...Now THERE'S a woman who should be recognized. Although....Supporters with Guns would make a great headline...scary but great! Thank you Margi. I really do appreciate your guidance! I know you are a very busy lady and I am thankful you took some time out to point me in the right direction. Donna D. P.S. What COLOR are your new socks? Might be a slow news day (you never can tell)! LOL! |
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Title: Re: My Sincerest Apologies... Post by Ree on Nov 4th, 2003, 7:20pm Hey Donna I agree whole heartedly... Jacks would be a perfect person to write about... also I thought it might be a nice idea to get some information about one of the kid sufferers... There are alot of stories to tell here... I was honored to be in the news letter last year... love to you ree |
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Title: Re: My Sincerest Apologies... Post by Donna_D. on Nov 4th, 2003, 7:47pm Ree, I have posted a message on the Clusters and Children area of the board...just waiting for some response. ANY response...If you know anyone who would be an ideal candidate in that area let me know. I will contact them. Thank You! Donna D. |
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Title: Re: My Sincerest Apologies... Post by Woobie on Nov 4th, 2003, 10:59pm I think Jackie's "Another kind of pain.... " should go into a newsletter! I think everyone should read that. [smiley=hug.gif] tina |
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Title: Re: My Sincerest Apologies... Post by ClstrHeadSupport on Nov 5th, 2003, 4:33pm Can someone tell me how I can get a hold of this newsletter? Perhaps have it sent to me. I believe I already signed up to get it on the O.U.C.H website but have yet to receive anything. Is there a way I can get copies of recent newsletters as well? |
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Title: Re: My Sincerest Apologies... Post by Margi on Nov 5th, 2003, 5:16pm Here is a link to the past newsletters. http://www.clusterheadaches.org/members/newsletter.htm It is located in the Members section of the OUCH website, so you do actually have to be an OUCH member to access that area (not sure why membership is necessary to read past newsletters?) but...there you go. OUCH membership is still free, so if you haven't signed up yet, now would be a really good time to do that. |
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Title: Re: My Sincerest Apologies... Post by Jackie on Nov 5th, 2003, 6:41pm Ladies, Thank you for your kind words. I'm humbled. Donna...We'll help you with whatever we can. You have a huge job on your hands. Something tells me you'll handle it just fine though. Supporters have lots of stores to tell as you've already read. Our Margi should be knighted (do they do that to ladies?) as 'the supporter's supporter' and crowned as queen of the 'supporter bubble bath'...., :D Jacks 8) |
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