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July 28, 2009

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July 28, 2009

I was diagnosed with oral cancer in February of 2004. I suspected what I had before I was actually diagnosed and found The Oral Cancer Foundation's website the night before. I cannot tell you how much it helped to read every word of that site and know if what I suspected was so, there was this site and the people on it that could understand and support me. For the next year they did just that, and I got far more information from the site than I did from the medical professionals guiding my physical recovery. I got spiritual and emotional recovery there, as well as information about what to expect at all stages of the treatment. This site is an invaluable one for a situation the general public is way too much ignorant of.

The Great!

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

my own life, and my own situation, as well as the many who also write into the site.

Ways to make it better...

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

make an even more concerted effort to make the world aware of oral cancer, raise it to the level of breast cancer awareness,organize walks for it all over the country through dentistry associations.

More feedback...

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

that they are open to questions and you get immediate feedback.

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

always kind and caring and immediately responded to concerns.

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

INCREASE AWARENESS.

Ways to make it better...

I had only known about oral cancer before it affected me!

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

They need more and more publicity. If this type of cancer is caught in time it can be cured...the problem is people do not realize how dangerous a sore in the mouth is or how quickly it can be a stage three or four.

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

thank GOD this foundation exists...there is NO ONE, literally NO ONE ELSE out there to turn to when you are diagnosed.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I was diagnosed with stage 4 tonsil cancer in April of 2005. I had never heard of tonsil cancer. I didn't know where to find any information or help. I remember asking a nurse "what is this called?". She told me "tonsilar cancer"; no one ever used the term oral cancer. I did a search on the internet and got stuff like "Mr. Bunny has his tonsils out". Finally I found the Oral Cancer Foundation. I spent so many hours on that site over the next year during my treatments and recovery. I don't know how I could have handled eveything I went through without the information I found and the people whose stories I read. I guess oral cancer is one of the more rare cancers (thank God) because there isn't much information out there. My prayer is that the Oral Cancer Foundation & its website would be available to everyone who is diagnosed with this disease.

The Great!

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

the way it helped me tolerate and recover from my cancer treatments.

Ways to make it better...

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

be really proud of myself.

More feedback...

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

the feeling of being part of a commnunity, instead of being on my own in a horrible situation.

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

over the internet, not personally. They were all helpful.

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

increase awareness about oral cancer and cause victims to be diagnosed in the earliest stages possible.

Ways to make it better...

I had found it sooner.

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

lack of publicity. Evey doctor and nurse who works with oral cancer patients should know about this and should inform their patients about it.

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

may God bless the founders of this organization!

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

The Oral Cancer Foundation provides many helps to communities around the US to raise the awareness of Oral Cancer. Their walks help involve many and raise money for needed research and imortant information. It is very helpful to have an organization as well informed, active, and caring as the OCF involved in helping patients and professionals.

The Great!

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

The web site provides up to date, quality information that helps people understand how to deal with oral cancer and how to help avoid it.

Ways to make it better...

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

Keep up all the efforts they are doing

More feedback...

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

the caring way they support people suffering with oral cancer and its effects.

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

Everyone at the organization is wonderful and dedicated to helping others.

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

Save a lot more lives and give relief to many more people.

Ways to make it better...

They are doing great!

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

Raising awareness of the disease

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

This organization is fdeserving of the highest accolades for their efforts.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I found the Oral Cancer Foundation to be the most valuable source of information. Information is current and factual. Far more so than traditional patient referred informational sites. Such as cancer.gov, cdc, webmd, medline, ect. Information obtained from The Oral Cancer Foundation allowed a partnership to develop with our treating physcians. Mutual trust developed when the physicians acknowledged and respected our information sources. We were allowed to be part of the decision making process. Knowing the pros and cons of each step and direction of possible treatment is ultimately the responsibility of the patient. We experienced a positive outcome and cancer free now for 4 years.

The Great!

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

the continued research of why oral cancer is increasing in numbers while smoking is decreasing.

Ways to make it better...

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

be very proud.

More feedback...

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

my husband survived and has flourished after being treated for oral cancer.

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

Professional, informative, nonjudgmental, factual, supportive.

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

cut oral cancer deaths by an astounding amount.

Ways to make it better...

I found the Oral Cancer Foundation site on day one of diagnosis and not a second later.

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

Getting additional PR exposure.

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

The Oral Cancer Foundation is invaluable.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I am a medical provider and a patient who has been treated for Stage IV oral cancer. I have found the Oral Cancer Foundation to be a wonderful resource to allow me the opportunity to learn about my disease, stay abreast of new research and developments, direct questions to my Cancer providers, and allow me the opportunity to NOT feel alone, isolated or without a sense of support. I cannot stress how important they have been in a disease that does not receive the prominence of other more common diseases. First Rate!!!!

The Great!

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

My personal experiences with this disease!

Ways to make it better...

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

I would try to get more national recognition, as they are doing now.

More feedback...

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

The opportunity to review threads and learn of others with similar experiences to mine as well as to review the most current research and information on my disease.

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

I have interacted, on line, and have been very pleased with the information I've received!

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

Help to increase awareness to those at risk before the disease develops, to improve screening by making the individual a more vocal advocate for that screening to be done.

Ways to make it better...

I had been able to find out about the organization sooner, due to better awareness of a relatively uncommon form of cancer.

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

Oral Cancer is so relatively small in incidence relative to other more heavily publicized diseases.

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

I appreciate all they do!!!!

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

The Oral Cancer Foundation Foundation helped me as a caregiver by providing information and support through their website. I found their website by searching the Internet when my mother, who lived with us at the time, was diagnosed with oral cancer. Nowhere else was I able to find such indepth information on various kinds of oral cancer and the exact processes of various treatments--and what to expect as to effects. The community boards provided support and additional fine information that allowed my husband and I to be better and stronger caregivers. Without the OCF website we would not have had the information and the insight to face this journey with my mother with the calmness and strength that we did. I felt grateful that the website also gave me a place to pass along some of the insights I gained along the way. During the long months that I relied on the website, in the spring and summer of 2003, the site was growing and adding more and better information by the day. Occasionally now I revisit the site and I am amazed and gratified that it has grown. OCF truly got my family through a very difficult time by providing excellent, in-depth information and support.

The Great!

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

the confidence it gave me and my husband in caring for my mother, who had oral cancer, and in the information and support it has given other caregivers, as evidenced on the website.

Ways to make it better...

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

...be proud that it has continued to grow and be a vital source of information for patients and families---in 2003, when I used the OCF website it was still very young.

More feedback...

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

"enjoyed" is not the word I would use. What I appreciated most is that the information I received about oral cancer, various treatments and likely results of treatment was accurate and frank and not "sugar-coated" or euphemistic.

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

first-rate. The person who started the OCF was the only "staff" at the time. An oral cancer survivor, he was an excellent provider of high-quality information and support who kept the interactions on the site at a high level.

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

it could insure its continued existence. Oral cancer is not a cancer heard about much in the news and is not a highly funded cancer. All the more reason that a high-quality source of information like the OCF website be available.

Ways to make it better...

I found the OCF website to be helpful in every way at the time I used it.

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

I have only interacted through the website, but as a development professional, my guess is that it is difficult to secure funding for a non-profit organization that is web-based and does not interact with its clients face-to-face and can't prove outcomes.

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

what makes this organization useful is the the quality,the frankness and honesty of the information it provides. The person who started it had oral cancer himself and knows that sugar-coating info isn't what patients and families need.

When was your last experience with this nonprofit?

2003

July 28, 2009

more

July 28, 2009

I recently finished radiation treatments for cancer of the vocal cords. The Oral Cancer Foundation was my most trusted source of information. The forums are wonderful; being able to share experiences is invaluable. This foundation is real 'hands-on' help with everything a patient (& caregiver) may experience during the painful process. I can't thank them enough!

The Great!

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

the participation in the forums of people everywhere.

Ways to make it better...

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

I'm not sure - try to raise funds to publicize the cancer. Put more tags on the site so searchers can find it right away.

More feedback...

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

I felt it was totally trustworthy.

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

online - extremely helpful, I didn't feel so 'alone.'

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

raise awareness about oral cancer. The cancer with a stigma that isn't publicized.

Ways to make it better...

signing up for forums was kind of difficult. Had password problems, but once fixed was okay.

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

money.

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

I referred the Oral Cancer Foundation to the nutritionist at the hospital where I was receiving treatments, she was thrilled.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

Hard to put into words what The Oral Cancer Foundation has meant to my husband - and me. My very strong, very active husband was thrown a curveball when diagnosed with Stage 4 tonsil cancer in June of 2004. The journey he took was decidedly ugly, but because I found invaluable information - and caring friends - on The Oral Cancer Foundation website, I was able to help him through chemo, radiation, a PEG, blood clots, surgery, misery, depression and sadness. Members of the group became true friends; as concerned about Tom's welfare as I was. Participating in a fundraising Walk allowed us to meet these on-line friends who remain in our prayers. Happily, my Tom is just a few months away from the Magic 5 Year mark. He may never regain his weight, and he will never regain the muscles in his neck and shoulders, but he never lost his faith in God - and he found new faith in his fellow man through the care and support he found with the Oral Cancer Foundation. Thank you

The Great!

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

the personal, caring way they ministered to my needs as caretaker for a very sick man.

Ways to make it better...

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

continue doing what I am doing

More feedback...

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

meeting people who were going through or who had survived the same devastating cancer that my husband was battling. Oral cancers are horrific and survivors live with the visible scars for the rest of their lives. Too many no nothing about these cancers.

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

make more aware of the horrible cancers that can come from tobacco use AND that even non-tobacco users can be struck by this disfiguring/deadly disease;make more aware that EVERY visit to a dentist should include a cancer screening;let more SEE the effect

Ways to make it better...

I cannot find anyway to make it better

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

getting "word out!"

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

the world is blessed to have those who will take their misfortunes and turn them into positive influences/experiences for others.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

My husband was diagnosed with larynx cancer in July 2005 and I started looking for support groups right away in order to find out as much as I could from those going through the same thing. Throughout his treatment and for 2-3 yrs thereafter, both he and I found links to the latest information on oral cancer protocols and news as well as morale support by reading the forums. The information we found on the website was invaluable. Fortunately, so far, all is well with us and so we lurk more infrequently. However we are now donating to the Oral Cancer Foundation annually and feel that it provides an invaluable service to cancer patients and their families.

The Great!

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

reading the forums and seeing the support that patients and families have received from fellow patients and from the value information found on the site.

Ways to make it better...

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

More feedback...

Ways to make it better...

While treatment of larynx cancer is similar to oral cancers, it is usually classified differently - so there weren't many people going through exactly the same thing on the forums. Reaching out to larynx cancer patients would expand the 'base'.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I found this web site after my 34 y.o. husband was diagnosed with Stage 4 oral cancer. Thank God, he survived. The web site provided me with a trustworthy resource for accurate, helpful information. Even more importantly, they provided me with an opportunity to reach out to spouses, patients and survivors with my questions and my fears. Oral cancer has many cancer-specific problems and questions that general cancer websites could not address. I am incredibly grateful they were there when I needed them.

The Great!

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

my interaction with other website visitors and forum members

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...

They helped me to have the strength I needed to help my husband recover. I also make sure my Amazon purchases are linked back to their website.

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

Make the unknown risk factors more publicized. Oral cancer is one of the few cancers growing in numbers but without significant advances in treatment. The outcome, even if the patient survives, can severely affect quality of life.

Ways to make it better...

Long time forum members had not been critical of some comments that were made by visitors.

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

Mostly, public awareness. People who are young and never smoked or chewed tobacco can still be victims of this potentially disfiguring and life-changing disease

When was your last experience with this nonprofit?

2009

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