#3135 07-31-2004 02:35 AM | Joined: Mar 2002 Posts: 102 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Mar 2002 Posts: 102 | Ed, that is such a great idea. What a wonderful way for you to honor her, to pass something on to her girls that lets them see what a special person she was.
Julie
Wife to Kelly
SSC tonsil Stage IV
July 2000
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#3136 07-31-2004 04:09 AM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I try to get us out there. 7 days a week I am working towards that and other OCF goals. There is a chance that Ms. Danner will do a different kind of TV spot that will mention OCF in the next month which may lead to more exposure, and hopefully public and corporate support. I got a call from Entertainment Tonight, who would like to send a camera crew and Mary Heart to the filming of Blythe's PSA for TV at the studio we are going to use. They would then have them filming us, filming her, and after the shoot interview her about why she chose to do this. Oral cancer, and in a much smaller way, OCF, would finally get some real TV airtime. It's been almost 5 years of banging my head against this wall. One day we will become an overnight success as this reaches a tipping point, but not without lots of people getting involved and making calls, writing letters to studios, Oprah, Katie, People Magazine, and the things that get you on the map. I can only write and call so many people a week. (And then there is the real WORK of what OCF does that has to happen too.) I hope that I am still around to see that day when this disease and all that has been done by OCF sees the light of the public's sight. .... my head is getting a flat spot in it.
But you have to realize that ACS has over 500 employees
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#3137 07-31-2004 05:05 AM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Brian,
I know that it gets discouraging at times, but all of your hard work has paid off for all of us that have received information and support from OCF, and, now you have made your breakthrough and things can only get better, as the message gets spread to the broader world.
Keep up the good work!
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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#3138 07-31-2004 03:16 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Brian,
If you can find the time, perhaps you could post the addresses of some of the people -Oprah, Katie, etc. - that you would like us to write to. I wouldn't mind writing some letters and if you can provide e-mail addresses for some of them, I would send even more.
I guess one really only has to write one letter, save it in Word or a similar program, then just change the name of the recipient and maybe a few minor details. Maybe we could get a real grassroots campaign going here. I'm sure there are other forum members who would write letters or send e-mails.
Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#3139 07-31-2004 04:17 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | At Oprah.com you can send letters to the show. I have sent close to 50 of them. A friend of mine has a family member that works there and that still hasn't helped out. I wonder if some type of petition would help, signed by all of us?? Or a personal story, such as Lynn's, with some of her posts, etc, sent along to show the depth of what this board does and the effects of Oral Cancer.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#3140 08-02-2004 05:05 PM | Joined: Aug 2003 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2003 Posts: 71 | Brian-
Thanks a million for all you do...you are truly an angel sent by God. A while back ago I sent you an email asking if I could volunteer to help you in any way. I know you are a very very busy man and I'm not complaining...but if you have anything I could please just give me a call or email. I too will send a letter to Oprah.
Lorie
Lorie/wife of Don, DX:8-7-03, Tonsil cancer left side stage III, IMRT x 35, 6 chemo (Cisplatin/Taxol), clear CT Scan 12-26-2003. Mets to both lungs & AML 11-6-05, mets to brain Jan 2006, mets to liver & bones April 2006, passed away July 20, 2006.
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