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July 28, 2009

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July 28, 2009

I stumbled upon the OCF website in Autumn '06 after being diagnosed with a stage 4 oral cancer with an unknown primary. Needless to say, that was an overwhelming time in my life and the information and support I found at OCF empowered me. I've never met anyone who's had an oral cancer and to be connected with so many who had this diagnosis satisfied a need in me to be understood. I learned a lot, I had a clear vision of what I was in for and I felt as if I'd found a haven of support. Thank you OCF. (For the record, I"m 2.5 years post treatment and have reclaimed my life. I'm better and stronger than ever). Mary

The Great!

I've personally experienced the results of this organization in...

how many people post and share on a daily basis. Some of the postings are excruciating to read, but OCF is loyal to its mission statement and provides information, support and an outlet for expression by those affected by oral cancer.

Ways to make it better...

If I had to make changes to this organization, I would...

send more frequent emails to those who explore the site. Sometimes, it's easier on us OC patients if someone else reaches out.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

it provided a measure of peace of mind, even when my survival was uncertain. Do you know how valuable that is???? It's of immeasurable value.

The kinds of staff and volunteers that I met were...

intelligent, experienced and compassionate. Endlessly.

If this organization had 10 million bucks, it could...

I don't have the experience of spending $10 million and so it's difficult to answer. My best guess would be that it should continue to do what it does so well already - which is to provide information, encouragement and support for oral cancer patients.

Ways to make it better...

I communicated with OCF. I read the postings and available information so very often but I could never bring myself to open up and post my own experience. In hindsite, I'd have done that.

In my opinion, the biggest challenges facing this organization are...

likely seen on the tech end of maintaining a website. It seems to be a massive effort to keep the site organized and user friendly.

One thing I'd also say is that...

for a long time, I had no vision that I would ever have any quality of life again. Between my own determination to cling to hope, the extraordinary care of my oncology team, the endless love of my beautiful family and friends, and OCF,I'm back. :-)

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

The Oral Cancer Foundation was, and continues to be, extremely helpful to me in my fight against oral cancer. The information and support was absolutely invaluable.

The Great!

I've personally experienced the results of this organization in...

My survival. With the information and support of the group, I made treatment choices that were successful.

Ways to make it better...

If I had to make changes to this organization, I would...

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The incredible amount of information that is easily available.

The kinds of staff and volunteers that I met were...

Very helpful

If this organization had 10 million bucks, it could...

Act as a clearing house of real and needed information for physicians and patients.

Ways to make it better...

I have no suggestions. They do a great job.

In my opinion, the biggest challenges facing this organization are...

Funding and staffing the website operations, letting physicians know they are there and the massive amount of information that they have available.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I found OCF in June of 2005, right after being diagnosed with base of tongue cancer, desparate and in need of help. With all the support given me by the other members of the site I was able to face what seemed at the time as an insurmountable task. The wealth of knowledge available on site coupled with the knowledge and never ending support from my fellow members has kept me fighting to this day. I will be eternally grateful for what the site has given me.

The Great!

I've personally experienced the results of this organization in...

my own personal life. I am still alive and can always find answers to my questions regarding what to expect next in my battle.

More feedback...

The kinds of staff and volunteers that I met were...

Many professionals, but far more just plain human beings, just like myself, battling an incidious disease. Real down to earth people with answers, caring and never too busy to help when they can.

If this organization had 10 million bucks, it could...

expand and in doing so bring in many many more in need of caring and help to fight their cancer. Even more, it could make more people aware of this ever increasing form of cancer, and that one can survive it.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I am a 2x oral cancer survivor. Don't know how i would have made it through my radiation treatment without the help and insights of the OCF Forum. I was better prepared every step of the way thanks to the advice and encouragement i received from the many survivors and caretakers on the forum. I even kept a diary of my own treatment experience to help others in the future. Brian Hill has done an amazing job with this organization.

The Great!

I've personally experienced the results of this organization in...

action as a patient and the knowledge i gained was invaluable

Ways to make it better...

If I had to make changes to this organization, I would...

hope to raise even more money to raise awareness

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

connecting with others who have gone through what i have

The kinds of staff and volunteers that I met were...

amazing

If this organization had 10 million bucks, it could...

raise awareness and early detection capabilities

Ways to make it better...

couldn't have been better

In my opinion, the biggest challenges facing this organization are...

money money money

One thing I'd also say is that...

this disease sucks

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I was this site while I was fighting Oral Cancer. This is the place to go for answers from people who have had a similiar battle. The insight is very valuable and helps prepare an individual for the many questions that come up related to treatments, after effects, what to do/not to do and on & on. Great site with wonderful and caring people.

The Great!

I've personally experienced the results of this organization in...

my personal battle with cancer and the help I received. Also I see veryday the people who would be lost without this site.

Ways to make it better...

If I had to make changes to this organization, I would...

Hopefully find a waty to get more funding to enable the OFC to grow and help more people and help in early detection of Oral Cancer

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

This site is all about helping people with Oral Cancer..... no politics , no preaching, no begging for money. The OCF is about helping people period

The kinds of staff and volunteers that I met were...

Smart, Caring, helpful, compassionate

If this organization had 10 million bucks, it could...

Literally save thousands of lives. This is a cancer no one knows about. It would educate the public and Dentist for preventiona nd early detection. Right now thousands die because no one knows hwat it is , how you get, how to prevent it and how to treat t

Ways to make it better...

If I would have found this site sooner.

In my opinion, the biggest challenges facing this organization are...

Getting everyone that has Oral Cancer to know about this site. Also getting funding to continue the fight. All cancer is horrible but thsi cancer you never hear about and no one know where to turn to get good information.

When was your last experience with this nonprofit?

2009

July 27, 2009

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July 27, 2009

I found this site during my radiation and chemotherapy treatment for cancer on the back of my tongue that had metastasized to my lymph nodes. I was a lurker for awhile but I saw too many people getting their answers from cancer survivors who had a cancer similar to mine. Finding survivors who have gone through almost an identical cancer is a great relief. No matter what you are told by doctors, finding a survivor with a similar cancer is emotionally priceless. It gives you a new level of hope. I joined in January of 2009 and posted my first question at 8 in the morning. Within 24 hours I had 10 replies. Two of which were from survivors with almost identical cancers. I found some the most valuable support throughout my treatment from this site and still view and sometimes post to it six months after my treatment ended.

More feedback...

If this organization had 10 million bucks, it could...

More easily spread the word. I've found no other resources like this one for oral cancer.

When was your last experience with this nonprofit?

2009

July 27, 2009

more

July 27, 2009

Excellent source of accurate information on oral cancer. Forum provides personal experience of others diagnosed and treated for oral cancer. Emotional support for patient and caregivers second to none. I found the site when my husband was diagnosed and going through treatment 2 years ago and continue to visit the site daily to offer what support I can to others, knowing how much it helped my husband and myself on our journey.

The Great!

I've personally experienced the results of this organization in...

People that have completed treatment offering support and advice and daily issues affecting newly diagnosed and in treatment

Ways to make it better...

If I had to make changes to this organization, I would...

Find some high profile people that could draw attention to the disease.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The wonderfully supportive folks on the forums.

The kinds of staff and volunteers that I met were...

Kind,compassionate and giving plus very knowledgable.

If this organization had 10 million bucks, it could...

Raise awareness and money for research.

Ways to make it better...

I had found the site at the time of diagnosis.

In my opinion, the biggest challenges facing this organization are...

Raising the profile of oral cancer so that more money is dedicated to research and also increased awareness of the prevelance of this type of cancer so that more routine screening is done.

One thing I'd also say is that...

Thanks all that work tirelesslty for the cause, especially Brian Hill.

When was your last experience with this nonprofit?

2009

July 27, 2009

more

July 27, 2009

I have sent all of my patients to this web site with great results. Everyone has thanked me for hooking them up to such an informative and open forum. I believe this site has all the elements that can assist a patient when face with the news of possible cancer and its effects on their life.

The Great!

I've personally experienced the results of this organization in...

patients that I have referred to the site

Ways to make it better...

If I had to make changes to this organization, I would...

raise more money

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

its open discussion about this disease.

The kinds of staff and volunteers that I met were...

excellent

If this organization had 10 million bucks, it could...

expand its message and reach.

Ways to make it better...

More people knew about the site

In my opinion, the biggest challenges facing this organization are...

funding.

When was your last experience with this nonprofit?

2009

July 27, 2009

more

July 27, 2009

When my husband was diagnosed nine months ago, I started to do research. It's so important to be informed about all aspects of this illness. Knowledge is power and that's one of the many positive aspects of OCF. The Foundation helped me, as a caregiver, in practical ways with it's extensive library of knowledge and on an emotional level to cope. OCF offers all the up-to-date information about research and treatments for anyone to access. The forum for patients/caregivers/friends is like a big family, offering support and advice. OCF is an invaluable tool in the fight against Cancer because it encompasses both the scientific/medical and emotional aspects of this disease.

The Great!

I've personally experienced the results of this organization in...

OCF spreads awareness in the medical field and with dentists/oral surgeons.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The support from OCF has been invaluable.

When was your last experience with this nonprofit?

2009

July 27, 2009

more

July 27, 2009

What a wonderful and activly functional organization. I got more information and support from this ORG than all the other "Big Giant Cancer Orgs" Combined.

The Great!

I've personally experienced the results of this organization in...

My own experience.

Ways to make it better...

If I had to make changes to this organization, I would...

Attempt to provide Treatment Centers with promotional materials.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Responsive to the point of being nearly real time.

The kinds of staff and volunteers that I met were...

Fellow patients and survivors, well versed.

If this organization had 10 million bucks, it could...

Research and provide resourse materials for sufferers.

Ways to make it better...

I had found them while in treatments

In my opinion, the biggest challenges facing this organization are...

Funding

One thing I'd also say is that...

They are the MOST deserving Cancer Organization I have seen.

When was your last experience with this nonprofit?

2009

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