| | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Ginny,
I agree with you as well! I'll add that I don't think that OCF has anywhere close to 6000 active members...if you look at the names on these boards that pop up regularly and semi-regularly...it looks OCF had 100% participation with active members rather than 3%.
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 63 | And I hope people will continue to post there when they have had a positive relationship/contact with OCF. While they ran this contest to get their new Great Non Profits website up and running and get it filled with posts, this site will be there for years to come and be looked at by people that are researching non profits that they may wish to donate to. I hope that at this time next year we have many many more posts, and that it is something that people will continue to participate in that may have positive consequences for our organization in the future.
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.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | I agree that looking on the bright side of things is the way to go. I did go back and do an informal tally and it does look like close to 100% participation of all those who post here regularly. Winning is not everything. I will be curious though if this Great Non Profit site is still up and running a year from now, or if it will ever catch on with the general public or donors. They apparently do not update nor refresh their web site over the weekend so it appears as though the contest is still on if you don't read the small print. I would never have heard of them but for Megan's post and email.
Thanks to all the regulars here for rallying and pushing OCF's score up so dramatically.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Did anyone see the winning list. OCF won in the Small non-profit category! Both our main competitors won in the 2 other budget-based categories. Pediatric CRF in the Large and Wespark in the Medium. You guys came through. Now I hope that the media coverage is worth it. 
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.
| | | | | | MeganCannon Unregistered | | MeganCannon Unregistered
| I have GREAT news!! Today we got the call notifying that OCF is the NATIONAL Winner of the Cancer Fighters Award for Small Non-profits! THE PEOPLE HAVE SPOKEN! The results are in! Check out the best-reviewed cancer-fighting nonprofits in the country! http://www.greatnonprofits.org/cancer?/facebookwallThis comes to us as a pleasant surprise! We are thrilled! Their decision was not only based on the amount of reviews but also the content of our reviews. We will be rewarded with a national press release that should go out later this week. Give yourselves a HUGE pat on the back!! Without the relentless dedication and support from all of you this would not be possible. All of your hard work really paid off and we cannot thank you enough for helping us win this award. I will be sure to post the press release on the forum for you to see once it comes out. You guys really did come though and you made a difference. You should be proud. | | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | I am thrilled to read the news. I saw it first on Faceboook.
You guys really came through.
I'm glad we had 3 laptops with us on vacation. That Friday night push really worked.
Congrats to everyone and thanks Brian for all you do for us.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | A big YIPPEEEE!!!!!
This is wonderful news. The numbers could have been much better. But we worked together and got OCF the recognition it deserves. This is only a small example of what can be accomplished by teamwork of the dedicated members. This review brought people out of the woodwork. It honored those who were no longer with us. Lets hope that now OCF will be more noticed and oral cancer awareness will be improved.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | I'm so proud of our wonderful organization. Thanks to all who wrote, and to Brian for bringing the organization to where it is.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I got an email telling me about it. It seems we did much better than was the thought.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I can forward the press realease from my email to you if you want it right now.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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