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MeganCannon
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MeganCannon
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Hi Charm,

I updated the OCF profile on great non-profits. We're also working on a statement listing what the foundation can do with various donation increments. Thank you Donna, Liz, Charm, Jal, Susan, Clroser, Davidcpa, RPCA, Janabus10 for your reviews!

Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: May 2002
Posts: 2,152
I'll try to write this up over the weekend.

Let me make certain I have this correct. The section that says YOUR REVIEW is the big write up everyone has done.

The section that says WHAT DO YOU DO is the little write up that appears to in highlighted text to the left of the big write up? Is there a character limit on that one?

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Mar 2002
Posts: 4,916
Likes: 63
OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,916
Likes: 63
Megan showed me the effort she has been on with people on the board to help OCF get noticed in a positive light by an organization that reveals the good and bad in the non-profit world. Obviously, I was hopeful that this site, which allows those who wish to find worthwhile charities to connect with, might help us reach out to potential funders, and perhaps even to others in need that might find us through that means.

Overall I'm a pretty stoic kinda guy. I was brought up to tough things out, not be gushy or express my emotions and so much more. I've only had my emotional wall broken a few times in my adult life. Vietnam, and the intensity of that experience in manners that I could never express in words to others, bonded me to my comrades in arms, and often in private brought me to tears at the loss and horror around me, combined with the knowledge that too many of those I treated as a medic were not going to make it, and they shared that end with me in the most personal of ways.

Cancer was another intense ride that threw me around emotionally like a play toy in dogs mouth. The combination of pain, hardcore drugs, fear, and the sense of loss, was crushing.

As those of you who have been around awhile know, I am not the most emotional of posters on the boards. I was hurt greatly by the early losses of some of the finest people that I have ever met here, and I defensively stay now to the science issues mostly, leaving the emotional support to others better qualified to give it.

In my gut I know that OCF does good. I see the research that we have helped pay for that elucidates new, useful information, whose application - like what we have learned about HPV in the last 8 years- changing the face of screening and early diagnosis profoundly. I know that my testimony at government agencies has helped sway and alter policy that impacts the public good, as well as oral cancer patients specifically. I hear from others that my many, many lectures at universities, and interviews in the media have help teach, and increase understanding of our disease in both the public and the professional community, not to the extent that I would like, but it is an ongoing building process. So I am lucky to live this life of service that I have come to love and find so rich, and think of it now as one in which I finally, within my own self image- believe that I am, in a very small way, an agent of positive change, with my personal drive and OCF as the vehicles to accomplish very specific goals that our science board have helped me define.

But I was not prepared for the words in your postings about OCF, and certainly not your kind comments about me directly. I have to tell you that those of you that have articulated the good that you have found in OCF, touched me in a very profound way. Your very personal perspectives took me by surprise and raised a lump in my throat to read them. I don't really know what to say in response to them. That OCF which started as such a simple seed of an idea, could become what it has, a vehicle to actually do good in the world on such an individual and personal way, really speaks only to my tenacity, and more to the strengths of those of you who are the OCF family. Who come here during your treatments, and even in physical pain and emotional distress, find the inner strengths to put you own issues aside, and offer guidance, and emotional support to others. You are all truly heros in the purest sense of that word. Believe me I know of what I speak. And when I left the last batch of real world heros in a distant country decades ago, I thought I would never find their like again. I was wrong. It is a privilege to be in your company, and your expression of your positive feelings about OCF are the greatest reward I could every receive for the small part of it all that I play. I thank you all very much, for your support, for your caring, for your willingness to be part of the solution, and now for your kind words.



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: Feb 2007
Posts: 1,940
"OCF across the pond"
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"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
((((((brian))))))))


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
ATTENTION OCF POSTERS: Only 13 days left to go to Great Non Profits and Review OCF.
It's easy: Just click on Megan's link. Be sure to rate OCF 5 stars and click YES on the dropdown question about the Cancer Fighter Award. Tell it like it is.
Kudos to the 6 newest raters: mgm, ray1971, eva, miketuthill, tomgrogg, and jal. That makes 14 out of 6000. We can do better folks. Log on this weekend. You can even post pictures. Let's have a hundred reviews by Monday.
Cookey (Liz): I did not need a translation - guess I watch too much PBS British shows wink "Bolshy Buggar" fits me to a T. An appellation I wear proudly. Again, my cybername gives me 8 more years to become charming.
Finally Brian : What goes round, comes round brother. You have made and continue to make a real difference in this world. Bless you.
Charm

Last edited by Charm2017; 07-18-2009 12:11 AM. Reason: URL GLITCH

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: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,219
Talk about lumps in the throat. Brian, you are THE most humble person I am proud to call my friend!!!!!

I just finished the form and I was successful this time. I had tried a few days ago and just as I was about to finish, my Internet Explorer pooped out. I think this one actually was better than the first one.

I have still not made it through all the postings here on the forum since my return from Alaska last Sunday. I'm glad I did get to see this one (reinforced by Brian's email) and with my practice finally being sold yesterday HOORAY!!! I hope to get back here and get caught up.

OK, my turn....come on guys, get to the link...it's easy and could make such a difference. Can you even imagine your life without the OCF????

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)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
I just finished mine, It only take about 10 minutes to complete the review.

Lets get OCF the recognition it deserves!!!!


Christine
SCC 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 smile
Joined: Jul 2007
Posts: 939
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jul 2007
Posts: 939
Did mine yesterday...pretty quick and painless.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Jun 2008
Posts: 475
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Jun 2008
Posts: 475
Charm, way to go, could not have said it better. We need everyone on this board to help OCF. This is the something you can do to volunteer. It only takes minutes, but can make a world of difference to this foundation. I have read the posts on this forum daily for the past year and a half and am absolutely floored by the caring and supportive people on here. I know tht all of you can take a few minutes and express your thoughts about OCF. Please fill it out before the 31st, YOU CAN MAKE A DIFFERENCE!!!

Thanks to you all!!


Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!

*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker

LETS MAKE ORAL CANCER HISTORY!
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
OCF is now up to 25 reviews.

Lets everybody take just a few minutes to write a few positive words about OCF. Its been a lifesaver for me and many others.

Please help the place you go to for help!!!!


Christine
SCC 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 smile
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