#3317 08-14-2004 04:43 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | OK, we are finally going to get state events planned, develop state OCF coordinators who will work with hospitals other volunteers, and run events such a cycling for awareness, run for early detection, etc. and interface with print, radio, and TV media. About a dozen people have offered to start the grass roots effort to put OCF on the map in the media, and get involved with fundraising. I have learned a lot from recent interactions with the Lance Armstrong Foundation and others, and I think that we are ready to take our first small steps in doing this. Of course this all comes at a good time as or national exposure in print ads that are going to start appearing in newspapers, and the PSA's with Blythe Danner and Jack Klugman are going to start hitting the airwaves as well. Volunteers can run the gamut from those who just want to do a few hours a month of work on their computers, to those that want to get out and speak at schools and in front of the media. Obviously there are lots of little pieces of the puzzle in between these two levels of involvement that have to be filled to pull something like a fund raiser off.
A new forum where those of us that are going to make this happen has been started at the bottom of the forum list. It is where we will all come to work out the details of a variety of initiatives, events, etc., and coordinate making it all happen. If you want to be part of making a change in the world, and in this disease specifically, now is the time to stand up and be counted. Even if you have offered your time to OCF before, please re send your contact information to me by email, and I will send you the password to get into the new forum. After we get enough people involved, even if it is just in one state
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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#3318 08-15-2004 03:15 AM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | Me me me me! (tunefully said)
Sincerely,
Lisa in Ks
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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#3319 08-15-2004 03:37 PM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Hi Brian, Count me in too  Cheers! Tizz 
End of Radiation - the "Ides of March" 2004 :-)
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#3320 08-15-2004 04:26 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Brian,
I have just moved to Birmimgham, Alabama last week. Don't know the area at all, but working on it. I won't be working for a bit, so I have more time on my hands than usual. Let me know what I can do to help.
Thanks,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#3321 08-15-2004 05:46 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Hey Brian... I've still got three to four weeks left of active treatment but once I recover from that, count me in...
I write for a smalltown newspaper and am familiar with crafty newspaper worthy stories -- let me know what I can do... I love to write...
I definitely pass the word for OCF and this Web site whenever I talk with doctors, nurses, etc.
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#3322 08-15-2004 08:26 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Consider Virginia well covered. I have been on the news a number of times, once since my surgery, due to the success of my teams. I also have many contacts with the local schools and youth organizations and my doctors are all about helping with this.
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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#3323 08-16-2004 12:03 AM | Joined: Aug 2003 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2003 Posts: 71 | Brian-
You know you can count on me. I am not afraid to get out and about...contact doctor's offices, hospitals, etc.
Thanks for all the incredible work you do.
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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#3324 08-16-2004 05:01 AM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2004 Posts: 218 | Dude,
I am so in. Let me know what you want me to do. Owning my own company provides me time to get away on occasion. Say the word. Also, as a 42 YO I feel that raising awareness in younger people and helping the already diagnosed will be a valuable resource.
I am an excellent speaker and would love to hit the circut. Just ask my wife, she says I never shut up. The University Of Chicago uses me on a regular basis to speak with the newly diagnosed, both young and old. Personally and in there support group.
Just let me know Brian. You guys really helped me get throught this thing. Every time I look at my newborn I thank god for this site and my health.
I sure miss Lynn though.
Peace and Love
Robert
SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
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#3325 08-16-2004 07:22 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Brian,
I received your email and am willing to do whatever you need. Just say the word.
Robert,
There are several members of this forum we all miss. Packer66, Heather, Russ, Marcy, Scott, Lynn, Peggy and many others. I take some comfort in knowing they suffer no more! I also love to see someone beat this dreaded diaease. Score one for the good guy's!!!
Best of wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#3326 08-16-2004 03:48 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | I am "in there" (of course you knew that)!
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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