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July 29, 2009

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July 29, 2009

My daughter Heather was diagnosed with oral cancer at age 28. She fought valiantly for 13 months, before succumbing at age 29. I knew nothing about this disease and would have been lost had I not found The Oral Cancer Foundation (OCF). The Patient/Survivor Forum on the OCF website is phenomenal, full of people who have either faced the disease themselves or have been caregivers to those who have. Always willing to share their knowledge and compassion, these people became my lifeline. Brian Hill, the founder of OCF, is a tireless crusader, intent on bringing oral cancer awareness to the world. His efforts so far have saved many lives. Like the energizer bunny, he just keeps on giving and giving and giving. He finally has some help, but for several years, he ran the OCF practically single-handed, with just the help of his wife Ingrid and an occasional volunteer. Brian is the backbone of OCF. His efforts are awe-inspiring. Brian IS OCF. This is his life. Despite personal travails, he has made it his life's mission to eradicate this disease.

The Great!

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

the help that I and many others have received during the difficult cancer journey.

Ways to make it better...

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

do absolutely nothing differently.

More feedback...

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

the help I received during Heather's treatment, the compassion I received upon her death, knowing that I could reach out at any time of night or day and someone would be there to offer comfort, knowledge and support.

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

some of the kindest, most warm-hearted people I know.

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

help a lot more people. It could educate more dentists to the importance of regular screenings. It could fund more research. Mostly it could generate more awareness, which is crucial, because awareness saves lives.

Ways to make it better...

I had found the Oral Cancer Foundation sooner.

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

lack of funding and lack of public awareness.

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

I wish I had more money to donate to this great organization, so they could help save more lives. No one should have to suffer like my daughter did. This is a horrible disease and I only wish there were more Brian Hills out there to fight it.

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

I can only applaud The Oral Cancer Foundation for its informative website and support that is made available through the caring members on the message board. My husband was treated for tonsil cancer in 2002, but a recurrence appeared in September 2006. During the recurrence, I found the OCF website and message board, returning to it time and time again for valuable information. Cancer in any form is very, very scary. It is only through an organization such as OCF that we battle-weary caregivers and victims can find some safe harbor. My husband is in good health at the present time, and we are continually grateful. However, the thoughts of the disease and its impact on our lives visits me daily. Thanks, Loretta Wheeler

The Great!

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

the ability to navigate the difficult waters of cancer treatment.

Ways to make it better...

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

nothing

More feedback...

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

the support from other victims and caregivers.

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

NA

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

broaden its outreach and support research efforts.

Ways to make it better...

nothing

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

having adequate resources.

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

this group is great.

When was your last experience with this nonprofit?

2007

July 29, 2009

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July 29, 2009

I found the OCF site 15 years after I was diagnosed and treated for squamous cell tongue cancer. My diagnosis had come as a complete surprise, as I had never smoked and had been told by multiple doctors that I was not at risk for oral cancer. Long after my experience with it, I was actually looking for good resources for a couple of friends who had been recently diagnosed, and was amazed at the amount of current, relevant information that OCF had to offer -- far beyond what I could find on other cancer-related sites. If anything like this had existed when I was undergoing treatment, it would have been an enormous help and support to me. As someone who went through major oral surgery and weeks of radiation without the benefit of OCF's support network, I can appreciate how much this site can provide to someone facing this disease.

The Great!

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

the way it has allowed people from all over the world to share their questions and their experiences with oral cancer and to strengthen their resolve to fight it.

More feedback...

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

unselfish, and deeply concerned about the problems of those on the forum who needed to 1) get an accurate diagnosis, 2) make an informed decision about treatment, and 3) deal with the pain and other side effects of battling this illness.

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

do an even better job of helping more people to recognize the early warning signs and hopefully get a timely diagnosis to improve their chances of long-term survival.

When was your last experience with this nonprofit?

2009

July 29, 2009

more

July 29, 2009

In 2003 I was diagnosed with oral cancer. I was terrified and, although, I am an RN, I knew precious little about it and had nowhere to turn. I was lucky enough to find a surgeon, Eric Dierks, who recommended this site. I found more information and moral support here than anywhere. We walk the walk and talk the talk. I honestly do not know what I would have done without OCF.

The Great!

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

Many of the patients and families who received support.

Ways to make it better...

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

Hire Brian Hill!!

More feedback...

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

The friendships and support I received.

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

very strong and kind

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

Wipe out Oral Cancer

Ways to make it better...

I could have reached out and touched more patients.

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

recognition for the work they do

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

Thank you for listening to me.

When was your last experience with this nonprofit?

2009

July 29, 2009

more

July 29, 2009

I joined the OCF Survivor Forum in November of 2002, well before my treatment started, and the members of the forum there, and also information on the main site, helped me in ways that are unmeasurable. I have made many friends in all areas of the world and stay in touch with many of them to this day. Back in November of 2002 there really weren't any other oral cancer sites like OCF and there still isn't today. I have been honored to give back on the forum, what was so freely given to me. It has been a life altering experience for sure. I am certain that advice that I received there has helped me to survive the horrors of cancer treatment and it's aftermath. I have 6 years of being cancer free today and OCF was a major part of that. Conversely, it saddens me that I have lost so many friends to this horrific disease.

Photos

The Great!

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

feedback frrm people that have been helped.

Ways to make it better...

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

go crazy fighting an uphill battle all of the time for funding.

More feedback...

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

the diversity of people and cultures and the commonality of our plight.

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

compassionate, caring and dedicated to serving others.

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

fund basic cancer research.

Ways to make it better...

less people had died.

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

finding the funding to keep it alive.

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

The forum has grown by over 6,000 members since I joined.

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

Honest and realistic responses. Well moderated. Good research and medical sections. Members are extremely supportive to all. Safe place to post all concerns. Excellent preparation regarding what to expect during tx and questions to discuss with medical team.

The Great!

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

being prepared for the difficult period immediately following radiation treatment. Otherwise, I might have lost my mind.

More feedback...

When was your last experience with this nonprofit?

2009

July 29, 2009

more

July 29, 2009

Oral cancer? Never heard of it until my husband was diagnosed with stage IV squamous cancer in 2007. When I went on the internet to look there wasn't much out there on this what I now know to be epidemic cancer. The OCF and Brian Hill were saviors to me. Through each step of the uncertain course we were on I could reach out to OCF and find advice on what to expect, tips and everything else to get BOTH of us through this. The OCF is the best, most informative and most supportive website/foundation on this growing affliction. This is a cancer that is growing but unpublicized. OCF saves lives of those with cancer and their caregivers Thank God for OCF.

The Great!

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

my husband who got through treatment, learning to eat again, and live life to 99% of his pre-cancer self and the strength it provided to me as his sole caregiver.

Ways to make it better...

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

keep on Brian Hill and others who have been through the experience. And its one thing to hear from med staff its better to hear from survivors and caregivers. Things I learned from OCF were the copied by the med staff treating my husband.

More feedback...

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

No matter what our dilemna or problem...there was a group on OCF to help.

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

Saints!

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

Go beyond my imagination!!!!!!! Change the world!

Ways to make it better...

OCF could not have done more. They need to be supported to continue to keep up with new treatments, alternatives etc with this insideous disease. They were instrumental in getting my husband back to a normal life!

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

The public does not understand how prevalent this cancer is, how complicated it can be and that HPV is now a big connection to its cause. Even eradicated from a person it can have debilitating effects on quality of life.

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

Without OCF I would not have my husband today and I marvel at where he has been and come from. OCF gives caregivers the tools to do what can be done to really get the patient fully functioning. And for those who can't gove the beset life alternative

When was your last experience with this nonprofit?

2008

July 28, 2009

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July 28, 2009

I would have been lost without OCF. The forums were amazing. Incredibly informative, but more than that, there were just so many caring and compassionate people ready to help. My husband was diagnosed with stage IV base of tongue (BOT) cancer last July; this July (and since last December) he is cancer-free! BOT cancer is not exactly common, so there's not a whole lot of info out there. OCF fills a huge void and provides a very meaningful service to those suffering from oral cancer and those suffering alongside them.

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...

knowing that I had a place to turn when I needed to learn something or when I just needed to vent. OCF helped keep me sane throughout a completely insane ordeal.

Ways to make it better...

The search function on the forum was a little less persnickety.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

This was such a helpful site for me to find out in a nonthreatining way what I was facing after my diagnosis. I didn't have all the symptoms but when they did arrive, I knew what to expect and they let me realize that there was light at the end of this long, dark tunnel. It's great to know that you are not alone in this fight and that others have gone before you and survived and are willing to share their pain and triumphs with everyone.

The Great!

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

the awareness generated for this disease and the "handholding" that they give to all who are afflicted with it.

More feedback...

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

spread the word to more people with this disease.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

My husband was diagnosed with oral cancer in early 2006 and this site provided us critical information and invaluable support. It was our lifeline then and I cannot recommend it enough when dealing with oral cancer.

The Great!

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

The messages posted and improved quality of treatment and outlook of those stricken with cancer.

Ways to make it better...

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

Continue building the information for oral cancer patients, update for clinical trials and advocate awareness.

More feedback...

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

The amazing online community of those fighting cancer and their caregivers sharing experiences.

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

Amazing and dedicated to helping anyone who needed it at their site.

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

Raise awareness and get people diagnosed before the cancer is incurable.

Ways to make it better...

There was more awareness of oral cancer out there to begin with.

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

Lack of awareness of this cancer and its growing rate amongst otherwise young, healthy people.

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

As the caregiver for my husband during diagnosis and treatment, this was exactly the place to go for direct experience, support and practical information.

When was your last experience with this nonprofit?

2009

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