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#193431 11-29-2016 09:19 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
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: 6
In the US, most families celebrate Thanksgiving with lots of food, drinks, friends and family. For many oral cancer patients/survivors and caregivers this holiday is yet another reminder of the person we used to be. Of course all survivors are extremely grateful for being alive to celebrate all that life has to offer. But, we also mourn the loss of far too many good people who were taken from us due to oral cancer and its harsh after effect complications.

Over the years, Thanksgiving has changed to become not just one day but several days of celebrating. Black Friday has several varying stories as to why and when it began 50+ years ago. Today its meaning for many Americans is a tradition to shop til you drop often starting at 4 or 5am. In 2005 marketing companies created Cyber Monday as a way to promote online holiday shopping. Then came Small Business Saturday (SBS) which began in 2010. SBS encourages consumers to avoid the big box stores and to buy from small local businesses. In 2012 #Giving Tuesday was started as a way to promote philanthropy, giving back and community service bringing people together for a common good.

Behind this online patient support forum is a very small nonprofit that has a worldwide reach in many, many ways. Our message board gets thousands of hits every day from nonmembers. These people from all over the world are seeking up to date, reliable information relating to oral cancer. There's even more going on behind the scenes! OCF has been able to directly take part in the fight for issues as diverse as Kennedy's landmark tobacco regulation bill to a vaccine to protect boys as well as girls from HPV. Years ago when OCF began, our founder Brian Hill came across a young doctor who was starting to work on breakthru research about HPV. Back then HPV was unheard of. Much of what is known today about HPV, including its many strains, isolating the cancer causing strains 16 and 18 from 200+ others, vaccinations to protect patients from the bad strains which can cause not only oral cancer but cervical cancer, penile cancer, anal cancer, and genital warts was discovered by Dr Maura Gillison. OCF's name even appears at the bottom of many peer reviewed published research papers on not just HPV but also on immune checkpoint inhibitors and the latest breakthrus in treatments.

Also behind the scenes is Ingrid Hill, Brian's wife. She has worked side by side with Brian for 18 years to create OCF. Ingrid has played a major role in making OCF what it is today. As Brian has traveled all over the country giving hundreds of lectures on oral cancer and with his former company dental appliances, Ingrid has been working in the background to ensure OCF is in compliance with all the rules and regulations concerning taxes and nonprofit organizations. Ingrid is proud to explain how many nonprofit organizations arent run like OCF who keeps its administrative and fundraising costs below 15%. This earns OCF a 5 out of 5 stars rating from Guidestar.org which is an oversight organization of nonprofits. OCF gets top reviews from those OCF serves at Greatnonprofits.org. earning us top awards every year.

Ive had the pleasure of meeting both Brian and his charming wife Ingrid. It was a true honor to be able to meet such dedicated, hard-working, intelligent, caring people. They both have a heart of gold and have worked long hours nearly every single day for 18 years to make certain OCF is a success. As you see, OCF is not just any charity. OCF does great things with their donations and is working hard to find an

I'll end this post with a quote from Brian... "We will bring this disease down, through mechanisms well defined by the science professionals that guide OCF. Please help us again on Giving Tuesday. We cannot do this without you."

Please consider making a donation to OCF (if you are able to) for Giving Tuesday.

Thank you!!!

Christine B.
Director of Patient Support Services and
Volunteer Senior Patient Advocate
The Oral Cancer Foundation


OCF's Giving Tuesday

Last edited by ChristineB; 11-29-2016 09:27 AM.
ChristineB #193432 11-29-2016 10:23 AM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Well said, Christine! You hit a lot of points close to home, and In my thoughts! It made me think while sitting in the head and neck cancer department waiting to see my SLP, how many patients here may have been helped by OCF, which brochures are on the table got reading too. I will gladly make a contribution for OCF's Giving Tuesday.

Thank you,
Paul


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






ChristineB #193436 11-29-2016 07:41 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
OP Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Thank you very much Paul!!! I know we can always count on you for your continued support. Paul, if you or any other members dont see our brochures in the waiting rooms of your head and neck cancer centers or ENTs offices, let me know. We can easily send some to our members to distribute on their next doctor visit.

Only thru working together can we make big changes happen. Oral cancer can get the recognition and funding that a deadly horrendous disease should receive. The general public will know what oral cancer is and how important it is to get properly screened every year.

While writing the above post this morning I was reminded of how many things Ive learned and how OCF has helped me over the years. It took me a couple hours to create that post as I spent a great amount of time reflecting on the past 9+ years since Ive had cancer and been part of OCF. How I wish I had the financial resources to make major monetary contributions not only today on Giving Tuesday but on a regular basis! I thought back and I remembered when I first joined this group. I was not aware of even half the things OCF did besides this forum. I didnt even know there were any other sections to the OCF website. Funny, how when I first found this website one of my biggest concerns was chemo would make my hair fall out. I quickly learned losing my hair was not important, that surviving oral cancer was my top priority.

Without Brian and Ingrid's foresight, dedication and many years of working 18 hour days, I probably wouldnt be here. I am eternally grateful to Brian and Ingrid for helping me to survive 3 rounds of oral cancer. They also helped me to have a meaningful life helping others after complications from OC left me as only a shell of my pre-cancer self.

Thank you Brian, Ingrid and all the wonderful members of our OCF family!!! Happy Giving Tuesday everyone smile


PS... I forgot to add a link to our OCF store in case anyone wanted to give one of our tshirts as a gift.

OCF store, new black tshirts

[img:left]http://www.ocfstore.org/v/vspfiles/photos/BLK-OCF-16-2T.jpg[/img]


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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