#95257 05-11-2009 03:50 PM | | MeganCannon Unregistered | | MeganCannon Unregistered
| Hi Everyone, This is Megan, the Communications Manager, at OCF. I want to let you all know of a few new ways you can stay connected with us and spread awareness of oral cancer. We are continuing to sponsor research related to HPV and over the next few months we will be focusing heavily on the relationship between the HPV virus and oral cancer. The foundation has recently partnered with the Paltrow family and family matriarch Blythe Danner, to create the Bruce Paltrow Oral Cancer Fund with a specific mission to help those in undeserved communities where disparities in health care exist. Heres where we can use YOUR help: Do you microblog? Do you Tweet? Are you connected with friends through facebook and myspace? Now OCF is too! Social Media sites are becoming a huge tool in spreading awareness and receiving support for Non-profits. Through the sites listed below, OCF has the potential to reach a vast audience and the ability to engage with people in conversation directly. If you're set up on any of these sites, please Follow OCF, Connect to us, get Involved, Spread the knowledge, Help the cause, Change the world. Thank you greatly for your support! Megan Facebook Page: http://www.facebook.com/pages/Newpo...71652992791?v=info&viewas=1725888604Follow us on Twitter: http://twitter.com/oralcancerfndAdd us on myspace: Myspace page http://www.myspace.com/oralcancerfoundation | | | 
#95280 05-12-2009 04:53 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) |  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I need to hire one of those Virtual Assistants. Unfortunately their resume would have to include at least Stage III HPV+ Oral Cancer.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 63 | David, I do not know if you subscribe to the OCF news feed, but I wanted you to see this article there given you HPV interest http://oralcancernews.org/wp/2009/0...-of-oral-human-papillomavirus-infection/
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I thought I had subscribed but I never get any feeds? Interesting article but the Head of the Pinellas County Infectious Disease Dept told me 2 years ago that HPV could be spread by kissing when she testified with me before the Florida House in favor of the Gardasil Vaccination Bill. Not sure what her source was lets hope we continue to examine more ways to control HPV.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | 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 | Interesting because there was no data at that time to support such a position. I appalls me how often people from the dental and medical community speculate, and state it as fact. There is either peer reviewed science or there is not in my mind, everything else is supposition.
OCF was a funder of this most current work of Gillison's along with major funding from the NCI. When this trial is published, it is something that I would talk about. Lecturing on this stuff as much as I do, I have to be very careful to distinguish what I know to be fact, (established through scientific method without or with stated bias, and peer review published in a major journal of repute, then duplicated by a second source), what the best minds in the US suspect is going on, and what are just out and out guesses based on what we know about other virus's behaviors, which certainly doesn't mean this one behaves the same. It is always walking on a razor's edge, and what people take away from my presentations isn't always what I said.
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 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 | David - just type this in your url window
feed://feeds.feedburner.com/oralcancernews
and then drag it down to your browser bar. Once there you can shorten the name to ocnews or whatever. when you see a little number next to it, it will mean there is new news to go check.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Brian,
That takes me to your post?
Maybe I did something wrong?
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Brian,
Being so new to your world way back then, I just took her word as gospel. She was the only one that said that to me but I did repeat it often as if it were proven. Glad I was right!! lol
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | | MeganCannon Unregistered | | MeganCannon Unregistered
| Order yummy treats and support OCF at the same time!! When you purchase items from the bakery, Baking for Good will donate 15% of the total to OCF! They have everything from iced cookies, brownies, Vegan & Gluten-free cookies & more! All of which can be ordered by the dozens! A great way to make your tummy and your conscience happy at the same time! Spread the word! http://bakingforgood.com/causes/nonprofit/the-oral-cancer-foundation | | | | | | MeganCannon Unregistered | | MeganCannon Unregistered
| For those of you who are unaware, OCF has a YouTube page with video messages from Blythe Danner, Jack Klugman, and just released yesterday- a message from me about the link between HPV and oral cancer. This is the first of three YouTube videos we will release by next year in which I will discuss the risk factors of oral cancer. Please take a look, make a comment, and spread the word! http://www.youtube.com/user/OralCancerFoundation
Last edited by MeganCannon; 10-06-2009 08:37 AM.
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