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319 Reviews
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July 29, 2009

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July 29, 2009

I learned of my stage 2 tonsil cancer Dec 2003 and found the OCF webstite. It was the best source of information and support that I had. I found several members who had a similar experience that could tell me what was going to happen the impacts, the do' and dont's and what to expect which was very helpfull. It reduced a lot of anxiety and made it alot easier by knowing what to expect and the success of others. Everyone should be lucky enough to have this tool as a resource for any major illness.

The Great!

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

Peoples response to the postings and the releif it gives them.

Ways to make it better...

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

Do what they are doing

More feedback...

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

Information and support from all the memebers

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

None

Ways to make it better...

I could get closer to some of the people that responded to me

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

Getting people to know of the organization

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

I was diagnosed with stage IV tonsil cancer in November 2008 - this web site has been a source of inspiration and hope as well as a resource for helpful information for me and my family God bless you for creatinga nd maintaining this site

The Great!

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

my life. When I was frightened it gave me hope. When I was so sick from the chemo and radiation that I was ready to quit it gave me the strength to keep on. When I was struggling to recover from the aftermath of the treatment it gave me help

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When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

The diagnosis of oral cancer was devistation to me and my family. None of us had much knowledge or knew what to expect. My treatments immobilized me and my daughter found the OCF and used it for knowledge and also made a lot of friends who were going through similar experiences. The foundation is priceless along with all it's members.

The Great!

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

the knowledge given about this disease.

Ways to make it better...

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

not change anything.

More feedback...

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

the members willing to share their experiences.

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

super! Posts are monitored and if something didn't appear to be correct, the monitor gave his opinion.

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

Advertise. I'm sure there are a lot of people who would benefit from the knowledge shared.

Ways to make it better...

I learned about this site earlier,

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

getting the word out.

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

I appreciate the help this site has given me and my family.

When was your last experience with this nonprofit?

2007

July 29, 2009

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July 29, 2009

When my husband was diagnosed with oral cancer in 2007, we were confused and devastated. I searched the internet for information and found myself coming back again and again to the OCF web site. The information I found there was invaluable. I turned to the Forums when he was undergoing radiation, and found many helpful suggestions for making his journey a little less devastating. We have found practical advice and comfort in the words of fellow survivors on the OCF Survivor/Patient Forum.

The Great!

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

providing help to people at a very frightening time in their lives.

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When was your last experience with this nonprofit?

2009

July 29, 2009

more

July 29, 2009

I am a caregiver to my wife who was diagnosed with oral cancer one year ago. I found the OCF website in the middle of the night while searching for answers. It has become the first place I turn to when facing new symptoms, problems or concerns. There are many available to offer answers and support as unfortunately, they have experienced the same situation in the past. I am far from any type of medical expert but thanks to others at the OCF, I can understand what my wife is dealing with and has in her future. Although my wife is losing her battle with this disease, OCF has helped ease some of the pain. I only hope that I can have the strength that those at OCF demonstrate helping others after experiencing the pain.

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

caring, knowlegeable, concerned and willing to share their experiences and feeling during difficult times.

When was your last experience with this nonprofit?

2009

July 29, 2009

more

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

more

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

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

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.

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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

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