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319 Reviews
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July 31, 2014
1 person found this review helpful

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2 previous reviews - show all
April 29, 2013

The Oral Cancer Foundation is the best source of information and support for those impacted by oral cancer. When I was first diagnosed with oral cancer, I knew nothing about it and had so many questi... more

July 31, 2014
1 person found this review helpful

The Oral Cancer Foundation (OCF) is the best source of information and support for those impacted by oral cancer. While some think this is a rare cancer, oral cancers will be newly diagnosed in about 115 new individuals each day in the US alone, and one person dies from oral cancer every hour of every day. Approximately 43,250 people in the US will be newly diagnosed with oral cancer in 2014. Finding information and support for those newly diagnosed is difficult since this isn’t one of the “popular” cancers. The OCF website and support forum fills that gap. OCF provides reliable, accurate and updated information on oral cancer via their website main pages or through the on-line support group. The on-line support group is available 24x7 and gives you the ability to connect with others that have gone through what you are going through. Now I did not feel so alone!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

April 29, 2013
1 person found this review helpful

The Oral Cancer Foundation is the best source of information and support for those impacted by oral cancer. When I was first diagnosed with oral cancer, I knew nothing about it and had so many questions. Eventually I found the OCF website and it was just what I was looking for! Reliable, accurate and updated information on oral cancer which answered all the questions I had and was unable to find the answers for elsewhere. Also, the on-line support group is the best – available 24x7 and gives you the ability to connect with others that have gone through what you are going through. Now I did not feel so alone!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

July 29, 2009

In June 2005 I got the devastating news that I had oral cancer. Since I never used tobacco products of any kind, this was not a cancer that I worried about or knew much about. I had so many questions and decisions to make in a short period of time. Unfortunately very little information was readily available nor was I able to find any support groups to guide me through the process. I relied heavily on my team of doctors to get me through this and fortunately they did, but what I also needed was to talk to someone that had been through this before and a reliable source of “all you ever needed to know about oral cancer”. The Oral Cancer Foundation was the answer to my prayers. Months after my treatment began I was directed to the OCF website. The information contained on the website has proven to be the most comprehensive, accurate, and up-to-date source that I have found on all aspects of this devastating disease. And the “Survivor / Patient Forum” is in my opinion the best support group out there for oral cancer, or for any type of cancer. With over 6,000 members from all over the United States and many foreign countries you have access to a “24x7” support network that consists of survivors and caregivers who are knowledgeable, compassionate, and more than willing to help those facing this disease and life altering impact of the treatments used to stop this killer disease. I and all members of the OCF community are extremely grateful for the efforts of Brain Hill, the OCF founder and an oral cancer survivor. Without his efforts many of us would have been left to travel this road scared and alone. THANK YOU BRIAN AND OCF!!

The Great!

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

the support and advice given to newly diagnosed oral cancer patients and caregivers via the survivor/patient forum.

Ways to make it better...

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

not change a thing.

More feedback...

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

having had the opportunity to speak with the Brian Hill, the founder, a number of times and I’ve learned first hand how dedicated he is to fighting this disease and how much he has single handedly accomplished on such a small budget.

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

extremely dedicated, caring and knowledgeable.

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

continue its great work including sponsoring more research on finding a cure and offering more free oral cancer screenings.

Ways to make it better...

I had found OCF ealier.

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

funding to support additional research, screenings, and maintaining the outstanding website and support forum.

When was your last experience with this nonprofit?

2009

July 23, 2014
1 person found this review helpful

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1 previous review
October 8, 2013

I found the OCF website shortly after being diagnosed with oral cancer. The information provided on their website was very helpful when I was trying to grasp the enormity of the diagnosis. The Surviv... more

July 23, 2014
1 person found this review helpful

I found the Oral Cancer Foundation when I was a terrified, newly diagnosed patient. The community forum and educational resources were invaluable to me then and through my treatment and recovery. As a three year survivor, I still often return to the community forum to both receive and offer support and information. I am so grateful to this organization.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

October 8, 2013
1 person found this review helpful

I found the OCF website shortly after being diagnosed with oral cancer. The information provided on their website was very helpful when I was trying to grasp the enormity of the diagnosis. The Survivor/Patient Forum was an invaluable resource for both information and support. It is extremely difficult to sift through all the information that's thrown at you while still reeling from the news that you have cancer. The foundation provided me with the information that I needed in a clear, concise format that was invaluable at the time. The forum provided me with a place to talk with people who understood what I was experiencing. I was relatively young and had a new baby when I was diagnosed. The forum allowed me to meet and talk with other women who were in similar positions. I can't overstate the impact that had on me. It was such a gift to know that I wasn't alone.

Ways to make it better...

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

Increase visibility so that even more patients and caregivers could join the community.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

July 20, 2014
2 people found this review helpful

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July 20, 2014
2 people found this review helpful

When you are diagnosed with cancer, there are simultaneously dozens of places to get advice and no places at all. What that means is it is easy to become overwhelmed with information and to almost drown in it. Cancer is scary - so very scary - and having a place to go, a place where people have been through what you're going through, makes an enormous difference.

The people at the OCF foundation are in treatment, survivors of treatment, caregivers to those with this horrible disease and yes, are sometimes those left behind. They are a wealth of knowledge and support because they have lived it. When I was diagnosed I nearly drowned in statistics, information and general fear. These people helped me sort it out. They continued their support by answering questions and providing encouragement throughout my treatment and have done so whilst I recover.

Best of all, I know that if I post today, two months since I last posted, I would be greeted warmly and my questions or concerns would be answered promptly.

This is a great site -- one of the most important in the world if you have head or neck cancer, and one of the best in the world for those looking for love, support and strength through one of the toughest battles in life.

Ways to make it better...

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

Modernize the interface -- it is a bit dated.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 20, 2014
1 person found this review helpful

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July 20, 2014
1 person found this review helpful

When we are first diagnosed with cancer we are all lost and terrified. That is pretty much true for all of us. What we need is to find a group and find it quickly that shows us and convinces us our cancer is not a death warrant, that it is survivable and thrive-able. OCF did that for me. Their members and staff are all supportive, knowledgeable and willing to share. Because they are a well moderated forum they don't have or tolerate misbehavior on their forums.

Like others have said, I give them 5 stars only because I can't give them 10.

Ways to make it better...

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

None

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 17, 2014
2 people found this review helpful

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July 17, 2014
2 people found this review helpful

When I was diagnosed with Tongue Cancer I discovered this organization almost immediately. I utilized the forums and the literature they had to manage my treatment and become a good patient advocate. This organization doesn't stop at just the diagnosis and treatment phase but continues to long term because survivors need information to manage long term effects of the treatment.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 16, 2014
1 person found this review helpful

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July 16, 2014
1 person found this review helpful

I am giving OCF 5 stars because I can't give it 10. This wonderful organisation provides imperative support to oral cancers patients and their families, through the patient forum and the authoritative newsfeed. The administrators are cancer survivors who are passionate educators and supporters of others, valuing scientific veracity and honesty in their provision of information. I found this particularly important as cancer can make patients and families feel utterly powerless, whereas knowledge from a trusted source is empowering. I know, as does every forum member that no question is too trivial or too personal or too embarrassing or has been asked too many times, such is the culture of OCF. Technically, the forum is user friendly, being easy to navigate and intuitive.

When my brother was diagnosed with Stage IV cancer our family was devastated, with no clue as to what sort of questions to even ask his treating doctors. I am so thankful that I happened upon the OCF in my search for support and information on the Internet.

Ways to make it better...

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

I can't think of how it could be improved.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 11, 2014
1 person found this review helpful

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1 previous review
April 10, 2013

My husband is an oral cancer survivor and I am his caregiver. I found the Oral Cancer Foundation during a particularly difficult time in my husband's treatment. The support I received from the Forum a... more

July 11, 2014
1 person found this review helpful

When my husband was going through treatment for oral cancer, I spent many nights searching for answers to his condition. I found the Oral Cancer Foundation one night and felt as if I had come home. Here was an organization dedicated to oral cancer and I immediately connected with others going through similar issues. I am so grateful to the OCF for the information,, education and research they have sponsored. The Forum is a group of patients and caregivers available at any time to help when the going gets tough. I have made friends all over the world who are with me every step of the way. I can't thank Brian Hill and his staff enough for the support I have received. It has helped me get through very difficult times. Today, I give back by donating to this worthy organization in the hopes that I might help someone else as I have been helped.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

April 10, 2013
2 people found this review helpful

My husband is an oral cancer survivor and I am his caregiver. I found the Oral Cancer Foundation during a particularly difficult time in my husband's treatment. The support I received from the Forum and the comprehensive information on the website were lifesavers for me. I have learned so much about this disease and so much appreciate what Brian Hill has created. There is no other site like this for those affected with this awful disease. I have made lifelong friends from the OCF Forum, many of whom I have met at the Awareness Walks. I consider myself a volunteer in that I support others in the Forum with the my experience of OC, and I give generously to the cause as I believe that awareness and prevention are key to a healthier future.

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

July 11, 2014

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July 11, 2014

I've been active on the OCF patient/caregiver forums since my husband was diagnosed with very-early-stage oral cancer in 2006. I was welcomed into a club we never sought to join and received invaluable advice. Over the years I've seen how the support of people who have "been there, done that" has helped newcomers survive -- and even thrive -- during the hardest points of treatment for this often life-threatening illness. The main pages of the site contain a wealth of information about various types of head and neck cancer, making the site "one-stop shopping" for people afflicted with this disease and for their families, who are often equally as affected, though in different ways. Since my first experience with OCF in 2006 (and my husband's full recovery), I've offered support and advice, when appropriate, in the forums.

Ways to make it better...

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

I can't think of any changes -- other than somehow arrange for a lot of money to be dropped on it so it can expand its life-changing work.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 10, 2014
1 person found this review helpful

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July 10, 2014
1 person found this review helpful

Informative place for anyone diagnosed with head and neck cancer. Website is well designed, accuracy of information and support on the forums is second to none.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

July 9, 2014

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July 9, 2014

My healthy and active husband (46) was diagnosed with Stage IVa throat cancer (SCC) on January 31, 2014. I am very thankful to have found the OCF website and its Patient Forum. The website has informative and thorough answers to my questions concerning my husband's diagnosis, treatment, and recovery. The OCF's Patient Forum contains advice and personal accounts which provide me with relief that my fear, worry, frustration and anger as his caregiver is normal and has been felt before by others. The contributing members graciously offer their experience and insight, sometimes humorous, but also sometimes heartbreaking. But knowing I am not alone at 3:30 am with a question about peg tube feeding, radiation burns, or cisplatin is of great comfort to this caregiver. Thank you OCF.

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2014

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