The Oral Cancer Foundation
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My brother-in-law and a great-niece both had cancer in thier mouths. They have both passed away, but while they were alive, the OCF helped, and has been a great comfort to my niece.
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The kinds of staff and volunteers that I met were...
very energetic and enthusiastic
If this organization had 10 million bucks, it could...
help at least 10 more individuals
When was your last experience with this nonprofit?
2008
I work in biological research and have always viewed cancer or any other disease a problem to be solved objectively. Frankly, for that very reason I have never really cared for the toll it takes on people affected or their friends and families. I believed that there was not much I could contribute unless I was part of the solution. Until of course one of your own falls prey. My friend had oral cancer 2 years ago. He has done well since then. But I was privy to empathy that I wasn't sure I had before. The OCF was a huge factor in his successful fight. I am grateful and would like to contribute in other ways than I previously thought possible. Thank you.
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What I've enjoyed the most about my experience with this nonprofit is...
it has and will provide valuable support to my friend and others.
When was your last experience with this nonprofit?
2009
The member forum for the Oral Cancer Foundation is the most positive place on the internet. The incredible knowlege base of the members provides caregivers and patients with both spiritual strength and medical knowledge to fight the good fight against all forms of oral cancer. My husband had to undergo both chemotherapy and radiotherapy for laryngeal cancer. The info provided in the member forums helped us make it through to the other side.
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I've personally experienced the results of this organization in...
the tremendous support given to new members who are seeking answers and help at a most difficult time.
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What I've enjoyed the most about my experience with this nonprofit is...
discovering that life goes on even with a dreadful diagnosis. The positive level of support from the dedicated volunteers is amazing.
The kinds of staff and volunteers that I met were...
filled with kindness and sensitivity.
If this organization had 10 million bucks, it could...
provide early screening to those who are unable to afford it.
When was your last experience with this nonprofit?
2009
I am a caregiver to my husband who is suffering from Stage IV Cancer at the base of his tongue. This cancer is particularly deadly especially if the tumors do not test positive for HPV. Already he has had a recurrence and a third time would be "catastrophic" as one doctor warns us. OCF is the full service stop on the internet: news, research, facts. advocacy and a virtual support group. It has meant a lot to me and even more to my husband.
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I've personally experienced the results of this organization in...
how my husband logs on every night.
Ways to make it better...
If I had to make changes to this organization, I would...
be proud of what I have done for so many others
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What I've enjoyed the most about my experience with this nonprofit is...
learning the facts about this cancer
The kinds of staff and volunteers that I met were...
wonderful
If this organization had 10 million bucks, it could...
fund even more research on causes and cures for this killer
Ways to make it better...
I had never needed to find this organization and my husband spared this cancer
In my opinion, the biggest challenges facing this organization are...
Funds and recognition.
One thing I'd also say is that...
OCF serves our nation and our world. It seems unfair that it is being rated as solely a West Coast organization.
When was your last experience with this nonprofit?
2009
This is a great website that has helped many people spread the word about oral cancer, its causes and treatment. My friend has oral cancer and this disease has irrevocably changed her life. Her doctor told her it used to be known as the "alcoholics cancer" seeing as big risk factors include smoking and drinking, but she tell me that there are so many young, non smokers posting on the forum that it gets very difficult to watch. The well established connection of this cancer to a certain strain of HPV is finally getting known in the health care community.
The Great!
I've personally experienced the results of this organization in...
How much information it has on the disease. When my friend was diagnosed I read alot on their website about oral cancer.
Ways to make it better...
If I had to make changes to this organization, I would...
Get more attention drawn to the disease, its causes and treatment. It now appears to be a cancer that is hitting those in the 30-50 age group very hard. Demographics are changing for this disease and research needs to be done.
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What I've enjoyed the most about my experience with this nonprofit is...
Again, the amount of and quality of information available. Sometimes when she would ask questions, I would tell her to go back and read a section that covered that topic. She spends more time in the forums getting support than in the factual data
The kinds of staff and volunteers that I met were...
I didn't meet any staff - just read the informative and well written articles.
If this organization had 10 million bucks, it could...
Fund more research which would lead to better earlier detection. Better inform the medical community about oral cancer. My friend's G.P. had never seen it before, and she had been in practice for 20 years.
Ways to make it better...
My friend had not gotten this cancer!
In my opinion, the biggest challenges facing this organization are...
Money and staff. I think the patients are too tapped out to really assist with the bigger goal of eradicating this disease.
One thing I'd also say is that...
Great info on a great site.
When was your last experience with this nonprofit?
2009
I contribute to the organization due to the tremendous potential they have to save lives. Seeing how they have grown and helped so many people is very satisfying. The Oral Cancer Foundation has been instumental in educating as many phycicians and the public as they can. Remarkably, they do this on a shoe string or less budget. It would be very gratifying to see what they could accomplish with some respectable funding.
The Great!
I've personally experienced the results of this organization in...
the 6 million or more hits it gets everyday on its web site.
Ways to make it better...
If I had to make changes to this organization, I would...
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What I've enjoyed the most about my experience with this nonprofit is...
all the donations go to a cause of improving education, outreaches to the dentists, helping its members, promoting and partcipating in research being conducted at the most recognized hospitals.
The kinds of staff and volunteers that I met were...
professional and very bright
Ways to make it better...
my brother had not to suffer as he did. If dentists were a bit more proactive back then. Instead of "well lets wait and see, we'llkeep an eye on it"
In my opinion, the biggest challenges facing this organization are...
They need to be funded generously now. There is whole army of young people coming up that will be getting this dreaded disease.
One thing I'd also say is that...
oral cancer is rising steadily higher while smoking is dramaticaly going down.
When was your last experience with this nonprofit?
2009
My friend Donna from Canada had tongue cancer. She looks good today but she has been through hell and back. Sometimes she gets very close to the people she meets there and then it is very hard for her when their cancer comes back. I help her through those times. We have been good friends for years. Although we are separated by miles we are together in friendship.
The Great!
I've personally experienced the results of this organization in...
This group really seems to help her deal with the cancer. This has been very very hard on her and I know she gets good ideas from the website.
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What I've enjoyed the most about my experience with this nonprofit is...
They are a very close knit group and anything that helps her helps me.
If this organization had 10 million bucks, it could...
Maybe go after the lawmakers to get chewing tobacco and cigarettes banned or at least too expensive for people to buy. I hear tell cigarettes are $12 Canadian for a package.
When was your last experience with this nonprofit?
2009
I'm 32 years old and have oral cancer. It started 3 years ago with a sore thoat. I have a husband and 2 little boys, that don't understand Why mommy is sick all the time. OCF has experience personal that answer my questions and give me support. There is some question they can't answer on line, so they refer you back to your doctor. I have lost about half of my tongue and my teeth,and I have a feeding tube and can not chew, swallow or talk. I've had 4 surgery and the OCF organization has been there for me, be it to rant or to know, what I can put down the feeding tube. or to just cry. They have given me new hope. They have good resources and easy to find answers.
The Great!
I've personally experienced the results of this organization in...
in my personal life and that of others.
Ways to make it better...
If I had to make changes to this organization, I would...
not change a thing
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What I've enjoyed the most about my experience with this nonprofit is...
the crew, no matter what they been thou, they give you hope and support.
The kinds of staff and volunteers that I met were...
wonderful.
If this organization had 10 million bucks, it could...
It could help look for a cure and help more people. Help spead the word that oral cancer kills.
Ways to make it better...
could not have been
In my opinion, the biggest challenges facing this organization are...
working with a deadly illness.
One thing I'd also say is that...
To many people are getting cancer.
When was your last experience with this nonprofit?
2009
The Oral Cancer was a great resource for my husband when he was battling tongue cancer. Prior to his tongue cancer, we had no awareness that oral cancer existed and that a simple screening should be done by dental professionals at every visit.
The Great!
I've personally experienced the results of this organization in...
receiving helpful advice from the founder and other members
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If this organization had 10 million bucks, it could...
Help create awarness for regular screenings, get more research underway and help continue advocacy work.
When was your last experience with this nonprofit?
2009
My mom has tongue cancer. She has been treated for it twice - Stage 1V bot times. The treatments have been just brutal but she has gotten through them. I know she has gotten alot of information from this website and made friends from it. It has given her alot of ideas about what to expect and what questions to ask the doctors.
The Great!
I've personally experienced the results of this organization in...
My mom seems to get alot of good information from the site. I know the last time she had cancer they were not going to do radiation again, but she read something about getting radiation more than once on that website, and they considered it and did it.
Ways to make it better...
If I had to make changes to this organization, I would...
Tell people not to smoke and not to drink diet drinks. I firmly believe that these two things were what caused my mom's cancer. I think there should be more information available about tongue cancer. No one had ever heard of it before my mom got it.
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What I've enjoyed the most about my experience with this nonprofit is...
I think my mom gets alot out of belonging to this group. That has made things easier for my dad. I no longer live at home so he has done most of the taking care of mom.
If this organization had 10 million bucks, it could...
Tell people what the dangers and risks are for tongue cancer are. I also think they should fund a study of the link between diet drinks and cancer.
Ways to make it better...
I would have liked to know and still would like to know what Stage 4 means. My mom seems to be doing okay right now - she is very very tired and can't speak. When I told my friends that my mom's cancer was Stage 4 they were very scared for us all.
In my opinion, the biggest challenges facing this organization are...
Telling people what the dangers are and how to avoid what my mom has gone through.
One thing I'd also say is that...
This cancer has changed all of our lives. The effects on my parents as well as my brother and I have been huge. I wish things were the way they used to be.
When was your last experience with this nonprofit?
2009
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