August 21, 2008 at 5:07 am #21475
So Lainy, you think every person should write his/her own letter version. I’d collect the patients’ letters and send them, and you’d collect the caretakers’ letters and send them. I can go with that. Serving as chairperson in more than I can count departments in school and committees for 35 years, it was a big headache to get teachers to do things like this. Nag! Nag! Nag! Then half of them just didn’t turn submit anything. Perhaps though in an instance so important as this, everyone will rise to the occasion. Count me in. Can you get it cleared with the board? I didn’t even know there was a board.
My prayers for all of you,
SophieAugust 21, 2008 at 3:20 am #21474lainyMember
Well, I think since we are all with this site it is OK if we make a collection and send them all together. I feel it would be a bigger impact than if they received them piece meal and perhaps some would even get lost. Not sure if we have to clear this with the Board but perhaps a Board Member can tell us. So. my suggestion is that anyone who wants to write a letter should. Perhaps you and I can volunteer to be “co-producers” of this. I could represent the caretakers and you could represent the patients, since that is our real life role. We could set a deadline to receive the letters via e mail. The letters have to be thought out really well so would like to give people a little time on this. Can you imagine sending like 50 letters in a bunch to her? Feel free to email me on this. Who knows this could be the start of something BIG! Mmmm reminds me of a song.August 21, 2008 at 3:11 am #21486
To Lainy and Irene,
Irene….great idea. I already added it to the letter.
Lainy, I read your post and got the idea from you and decided to roll with it. What should we do? Should we all send the same letter to Oprah and everybody….Congressmen? News Stations
How do we get everyone on this site to get a copy of the letter we decide to send, sign it and get it mailed? Somebody else might write a better letter than mine. I am thinking it might be better if we all bombarded her with the letters instead of all of them in one because she probably has so many readers. I defer to you guys. You are the ones who keep me from crying not as often as before.
My prayers for you all,
SophieAugust 21, 2008 at 3:03 am #21485lainyMember
Hi Sophia. Just the other day I posted a note on this site that we should go on Oprah! I think your letter is outstanding but what is better than 1 letter? More letters all sent in together! I also stated in that post that we should get bracelets, ribbons etc. We need to start getting more pro-active! If Oprah does not contact us we can try someone else. But I really think more letters and we can send them to one person who would send them all to Oprah.August 21, 2008 at 2:13 am #21484ireneaMember
Hi Sophie —
I think this is a great letter. I am sure Oprah gets a lot of letters like this so who knows if they all get read, but it is very well done.
I might throw in one more paragraph and note that CC is one of what they call Orphan Diseases because it affects so relatively few people — that might give them an opprtunity to look at covering it from a perspective as one of several Orphan Diseases, rather than focusing on just this one.
It’s an excellent idea. Thank you for thinking of it.
IreneAugust 21, 2008 at 1:54 am #21483wabalsMember
I think it is a powerful letter and you should send it.August 21, 2008 at 12:23 am #1443
It seems to me it would be great if we could get a powerful figure to present our cancer on a public forum. I have drafted a letter to Oprah, but I am not nearly as experienced or knowledgeable as most of you. What do you think of this? In addition, I don’t want to destroy any credibility built up on this site or give any kind of misinformation. What do you think? Can you add anything to the letter, delete anything or should I just hang it up? Who knows? Something like this might appeal to her and she might ask a bunch of you with continual incidents on her show. I’m too emotional. I’d cry the whole time so I wouldn’t be good.
Prayers to all of you,
My name is ___________, and I am a teacher who after 35 years was looking forward to my retirement and having grandchildren. Instead I was rewarded with a rare cancer, Cholangiocarcinoma; it
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