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#77182 07-18-2008 07:48 PM
Joined: Mar 2002
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OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,918
Likes: 65
I feel like a proud parent today. As many of you know OCF has many missions, that with the very meager funding we have to work with, we are slowly chipping away at and making positive change in the world by doing. We operate the world's largest single patient support mechanism (this forum) for oral cancer patients, which thanks to the benevolent contributions of time and information from survivors and other patients has helped untold numbers of people, especially when you consider the tens of thousand of lurkers that are logged onto the forum each month.

We have a mission to inform the American public about the disease and provide them with accurate, current and useful information about the disease, its risk factors, and its early signs and symptoms. We do this by just printing our one millionth "What you need to know about oral cancer" brochure which is the defacto waiting room publication, and used at events all across the country by numerous other organizations. Another vehicle to do this (these are only a couple of many) took a big leap this month. We broke our month previous high for hits on our web site of 19 million in one month last month, breaking the 20 million hit mark. The over 2000 page web site, is liked back to by more than 34,000 other sties, from the ACS to the NCI and the CDC.

We are pushing professionals in the dental and medical communities to be more involved in early detection of OC, and in the last two months it has been the dominant subject of both the JADA magazine for dentists, and their counterpart magazine in Canada. There have been more continuing education courses on oral cancer in the last year than in the previous 5 together, more speakers at professional symposiums on oral cancer, most of which OCF has been instrumental in getting on the programs or supporting in their authoring of articles.

Next month, with the help of four doctors from our science advisory board, we will issue the OCF standard of care screening protocol which will finally standardize what doctors are supposed to actually do that can be considered an appropriate and thorough examination for OC. A new OC study at Johns Hopkins will be the first to use it and see that all 22 institutions engaged in a current research project will all be using this standardized protocol, something the ADA hasn't even defined.

Many of you know that we issued grants last year to several researchers of importance around the country, (you can see the press release on this in the press kit part of the web site if you are intersted in who) and I am very proud to announce that another ground breaking paper elucidating more about the relationship between HPV and OC by Maura Gillison at Johns Hopkins, which we were the first contributing funders of, will appear in a major cancer journal (has been accepted by their peer review committee) for publication in the next 4 months entitled Oral HPV infection before and after treatment in HPV16 positive oral cancer patients, will reveal much about what HPV status is like after treatments. This is a question that many of us that came here from this etiology worry about. I cannot reveal the content of this paper until it is published. But it adds one more component to our understanding of HPV and Oral Cancer, and is a building block for the next work with doctor Gillison that we will be sponsoring this summer. As many of you already know, she has been a member of OCF's science advisory board since around 2002, and is one of OCF's most important relationships as the rates of HPV positive cancer skyrocket in the US. Her work, some of which is financially co-sponsored by OCF, with other organizations like the NCI, is completly changing the way that practicing dentist and doctors look at the disease. I cannot tell you what it feels like when OCF's contributions produce useful, tangible, new understandings of this viral etiology, and to have our name associated with this work. It is not some esoteric look at OC, it is an understanding that can help us in the realm of prevention in the future, as we identify transfer mechanisms, demographics of who is newly at risk, and the specific regions of the anatomy from which these tumor will arise.

I feel very proud that our small, underfunded organization is having real impact in the world, and now after awards from the NIH, the NIDCR, NYU, The Chicago Dental Society, and others for excellence in public service, our organization has helped one of the world's most important HPV researchers reveal additional information that will potentially effect treatments and vaccines for people already infected. It is another important step in our understanding of the disease. And yes, even I have personally been recognized by many organizations and in coutless articles in magazines and news mediums. While this is not about ego, when others whom you respect recognize your work as meaningful, it feels like I an at the right place, at the right time, doing what I was meant to do. I am humbled to be the first non doctor to be given a membership in the American Academy of Oral Medicine, of which there are less than 300 qualifying doctors in the US. This is not about ego, or legacy, but the recognition means that we are doing something right, that is worthy of notice. OCF has become the meaningful effort, with milestones accomplished, that is on a path to changing things that are obstacles to reducing the death rate.

OCF is more work than I ever expected, (certainly more than when I getting PAID to work!) but the recognition of our accomplishments is not going unnoticed, and I am supercharged to continue given our progress. I want you all to know, that those of you that help here on the forum, support the foundation through financial donations - no matter how small, even do small things like use our Amazon link on the site when you buy at this web giant, are all part of making this possible. Those of you that have purchased a monthly automatic donation in our store, I am particularly proud to be associated with. It means that your belief in OCF's mission and ability to affect change in the world is something that you truly believe in, and is not just a passing gesture. I wish to thank those of you who give back in many ways for making many of our accomplishments possible. You are a core component of our success, in what I hope is an organization that continues many decades into the future, surviving beyond my contributions until this disease is brought under control.

Last edited by Brian Hill; 08-05-2008 07:37 AM.

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.
Brian Hill #77186 07-18-2008 09:00 PM
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
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Way to go Brian.You have every right to feel proud,and i am honoured to be a member of your family.

regards as always
liz


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.
Cookey #77191 07-19-2008 06:52 AM
Joined: Sep 2006
Posts: 8,311
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To have started something so small with such a grand goal and to see it prosper and grow and help so many that had no place to learn before is a goal not many people worldwide ever get close to much less attain.

Proud is not even close to how you should feel.



David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #77206 07-19-2008 02:40 PM
Joined: Feb 2005
Posts: 2,019
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It's amazing what OCF has done with the resources it has, Brian. And it's all because of your hard work and total dedication. I'm also honored to be a part of the OCF family and help both financially and through this board in whatever way I can. Thank you thank you thank you for all your hard work.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Nelie #77226 07-20-2008 04:10 AM
Joined: Mar 2007
Posts: 55
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Posts: 55
Phenomenal! It is awesome to see your hard work coming to fruition!

Congratulations and thank you for all you do!


Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
lisa7594 #77227 07-20-2008 04:35 AM
Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Brian:

With your dedication and never ending hard work, you deserve to be commended. Thank you for helping so many. You really do make a huge difference in so many people's lives.


Thank you,
Christine


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
ChristineB #77236 07-20-2008 06:45 AM
Joined: Feb 2004
Posts: 598
"Above & Beyond" Member (500+ posts)
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Posts: 598
It is always rewarding to see hard work pay off. Congrats, Brian!!


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
JeffL #77244 07-20-2008 10:58 AM
Joined: Jun 2007
Posts: 5,260
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Brain , You are getting what you work so hard for. Some recognition which you so richly deserve. Congrats to the man of the hour from , I am sure, all of us.


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
EzJim #77249 07-20-2008 01:11 PM
Joined: Dec 2006
Posts: 147
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Posts: 147
Thank you Brian for remaining dedicated and determined to bring this horrendous disease to the forefront. I am forever in your debt....

Paula


Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
Joined: Jul 2006
Posts: 388
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Posts: 388
Brian, you are indeed a part of all OUR families, and we are happy that you are gaining the acknowledgements earned with the countless and never-ending hours (days, weeks, years) you have put into this phenomenal project. THANK YOU! Warmly, JaneP


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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