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287 Reviews
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April 26, 2013
1 person found this review helpful

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April 26, 2013
1 person found this review helpful

When I was diagnosed with oral cancer I knew nothing about the disease and how prevalent it was in society, with ocf's help I was able to understand the standard treatment course and prepare myself for the battle that oral cancer is. The members and subscribers were incredibly supportive and informative on all aspects of the cancer journey from diagnoses to being a survivor.....thank you OCF

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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

April 15, 2013
1 person found this review helpful

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April 15, 2013
1 person found this review helpful

I found OCF after I was diagnosed with oral cancer. OCF as a plethora of good information. Most important the information is not just cut an pasted together but is vetted and researched.... AND updated. The most importantly there is an outstanding forum for patients and support people that addressed issues that arise before, during and after treatment. This provides info and discussion on radiation, surgery and the many aspects of chemo therapy by people who are undergoing this and by cancer survivors. These survivors come from all walks of life and include, dentists, other health care providers etc. Want to know how to deal with a PEG, physically and emotionally, read survivor stories.
The forum is monitored by people with inside knowledge..... oral cancer survivors.

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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

April 13, 2013
2 people found this review helpful

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1 previous review
July 18, 2009

Thankyouthankyouthankyouthankyouthankyou--AND THANK YOU!...The Oral Cancer Foundation and everyone involved from the founder, staff to the people who dedicate their time are some of the most wonderful... more

April 13, 2013
2 people found this review helpful

When I was diagnosed at the age of 36, like so many, I knew nothing of oral cancer. OCF helps many people affected by OC through it's well documented, spot on accurate information as well as its on-line support group that teaches others through first hand knowledge and experiences from great people all around the world. An important factor that cannot be overlooked is everything done by Brian Hill, and all the awesome volunteers that do all the leg work to get the word out for early OC detection! They help lives, they save lives, they make a difference in someone's life every single day, 365 days a year. OCF is an asset and a gift to so many individuals.

Raymond Flaherty, OC survivor

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 18, 2009

Thankyouthankyouthankyouthankyouthankyou--AND THANK YOU!...The Oral Cancer Foundation and everyone involved from the founder, staff to the people who dedicate their time are some of the most wonderful people in the world. When I was diagnosed I was in shock and I was able to get through this treatment because of my loved ones, God, the doctors and OCF. OCF was able to give me something extra that others could not...An understanding of every little crappy thing that comes along with this dreaded disease...An understanding from those that traveled before me. OCF helped me live and I am grateful from the bottom of my heart. Thank you, Raymond Flaherty

The Great!

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

the eyes and faces of actual survivors.

More feedback...

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

meeting those involved.

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

beautiful.

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

save a lot of heartaches.

When was your last experience with this nonprofit?

2009

April 12, 2013
1 person found this review helpful

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April 12, 2013
1 person found this review helpful

I was diagnosed in August 2009. It was a very scary time. I had no idea what to expect or where to turn for first hand information until my sister found OCF. At a time of disbelief and horror, the family that is OCF was there with information, guidance, compassion, understanding and the kind of first-hand knowledge I needed to walk me through the harrowing experience that is oral cancer. To have access to immediate answers and information 24/7 is truly a unique and invaluable resource for patients, caregivers, family and friends alike. I have made lifelong friends among many members of OCF who continue to offer comfort and support in ways that friends and family could never understand. It's a place where bouts of depression are understood, accepted and worked through in a way that only someone with the same experience can relate to.

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

April 11, 2013
1 person found this review helpful

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April 11, 2013
1 person found this review helpful

In 2007 my father was diagnosed with oral cancer. He had just turned 75 years old and he and my mother were not very familiar with using the internet, so I set off to find as much information as I could to help them out. Almost instantly I found the Oral Cancer Foundation. Everyone on the forum was so helpful and supportive during our 18 month journey. We knew absolutely nothing about oral cancer and the little bit we had heard from the doctors was very scary.

24 hours a day 7 days a week I was able to connect with survivors and caregivers who would be there to lend a listening ear or give advice on how to deal with the daily struggles of having to adjust to this "new normal". Sometimes I felt like we got more information on how to deal with the daily struggles of eating and other issues that are only specific to oral cancer patients than we did from the doctors that were actually treating my dad.

I highly recommend OCF to anyone who is going through or a caregiver to someone with oral cancer. I cannot imagine what our life would have been like without the help of the caring, compassionate people that I met along our journey. I will be forever grateful for their help.

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

April 11, 2013
1 person found this review helpful

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1 previous review
July 15, 2009

I found the Oral Cancer Foundation about a week after my husband was diagnosed with oral cancer. Neither of us was familiar with this disease and our treatment center was an hour and a half away from... more

April 11, 2013
1 person found this review helpful

My husband was diagnosed in Dec 08 and we knew nothing about oral cancer. Thanks to OCF for always being there with answers and news and advice. OCF has been my "go to" spot for over 4 years.

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?

2013

July 15, 2009

I found the Oral Cancer Foundation about a week after my husband was diagnosed with oral cancer. Neither of us was familiar with this disease and our treatment center was an hour and a half away from our home. We had lots of questions and the good members of the forum on OCF and the wonderful educational pages made our journey easier. For patients and caregivers, family members and friends, this is a resource that is a must have!

The Great!

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

my own life as well as being able to help others.

Ways to make it better...

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

hope I could do it as well as it is being done now.

More feedback...

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

the ability to interact with other caregivers, patients and family members.

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

administrators of the forum who jumped right in and answered my questions as well as staff members who immediately forwarded information so I could help spread awareness, and lots of forum members who give wonderful support.

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

raise public awareness of this disease, help fund research, and keep the forum going.

Ways to make it better...

I had found OCF sooner

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

raising money for activism, research and the forum. Most of the people taking advantage of the forum are patients and caregivers....usually not in a position to fund the very forum that can help them due to medical expenses.

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

I hope this organization is around until it's no longer needed because a cure is found.

When was your last experience with this nonprofit?

2009

April 11, 2013
1 person found this review helpful

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April 11, 2013
1 person found this review helpful

In the spring of 2006, my perfect, busy, wonderful, HEALTHY life, came to a crashing, thundering halt. One phone call on May 1st and my life changed forever..."you have cancer"....three simple words.

What followed immediately thereafter was horrific; the screams of denial from my family,
my children were teenagers suddenly thrust into a situation that most do not experience until their 50's...the potential loss of a parent. Trying to find information on oral cancer was frustrating...there simply wasn't much available from the Doctors, in the library or on the web...until I found the Oral Cancer Foundation.

A few moments there, and I knew, deep down, things would be all right. When you're diagnosed with cancer, your world is suddenly filled with a lot of people; family, friends, friends of friends and family, medical professionals, and then if you're very lucky, you find the support and compassion of people who have been there....like the Oral Cancer Foundation.

These aren't a bunch of "internet experts"...these people are my FAMILY. They had walked the same path, undergone the same horrors that I went through, had the same fears, the same lack of information initially.

I fought the Beast that is oral cancer actively for a year. the following 6 years have been a blessing; seeing my children become adults, marry and have Grandchildren for me to spoil. I have the tools I need to live my life in my "new normal". When there are bumps in the road, I ALWAYS have my family at OCF to turn back to for knowledgeable advice, support and compassion. The people at OCF are different than anyone else in my new, "post cancer" life; my OCF family GET IT. They have walked in my shoes, and they understand that even with the new lease on life given to my by the amazing medical expertise around me, there would be many challenges to face. Without them, many of those challenges would have been insurmountable. With them, I know I can make it through.

Wayne Reimer
Regina, Saskatchewan

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

April 11, 2013
1 person found this review helpful

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April 11, 2013
1 person found this review helpful

My husband has battled with oral cancer and it's after effects for the last 4 years. Without the support and guidance from OCF I don't think we would have coped nearly as well. We are in Australia and have minimal knowledge available here for head and neck cancers. Support is also very minimal. There are organisations that do a wonderful job here but none that focus just on what we were dealing with. It was very comforting to me as his carer, to find OCF and I was welcomed with open arms. Even now 4 years later as we still struggle on and face new challenges, I know everyone is still there for us.

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

April 11, 2013
1 person found this review helpful

more

April 11, 2013
1 person found this review helpful

The Oral Cancer Foundation saved my life while I was going through 7 weeks of chemo and radiation. I know in my heart of hearts that I never would finished these aweful treatemnts without the love and support I got from both the very active members and the other cancer patients who were at the same stages of treatment as myself. The group helped arm me with the facts about oral cancer and the treatment options. The other patients and I leaned on eachother for support and guidence. They all became like family to me. I really really don't know where I'd be without them. I'm SO glad I found these folks !!!

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

April 11, 2013
1 person found this review helpful

more


1 previous review
July 21, 2009

I was diagnosed with oral cancer in March 2007. Prior to my diagnosis, I had heard nothing about oral cancer and didn't know it existed. With critical decisions to make, I trolled the web looking fo... more

April 11, 2013
1 person found this review helpful

I've never seen a charity do more with less. The minimal staff and passionate volunteers made a personal difference with me when I was struggling with the diagnosis. So little information was out there about a relatively unknown disease and this website was flush with information for both patients and caregivers. Their support board is unparalleled with questions answered 24/7. Their efforts in the area of awareness and outreach are outstanding. I don't know where I would have turned without them.


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 21, 2009

I was diagnosed with oral cancer in March 2007. Prior to my diagnosis, I had heard nothing about oral cancer and didn't know it existed. With critical decisions to make, I trolled the web looking for reliable information and finally came across this site and it's marvelous boards post surgery. What a wealth of information I found while lurking and reading the boards. I was impressed with the knowledge of the survivors who were quick to share experiences with treatment, decision making and daily challenges. I was impressed with the caregivers who came to share ideas and support. I was impressed by the dentists and other medical personnel who explained, translated and helped patients wind through treatment. No question was too small, no poster belittled. It was and continues to be today the greatest source of information and support for oral cancer survivors, patients and those awaiting diagnosis. For a relatively rare cancer on the rise, this site is essential tool and resource for us all that provides the best support with the smallest of financial expenditures. Beyond what it does for current patients, the oral cancer foundation does much to promote prevention and early detection. You can't get more bang for your charity buck anywhere else.

The Great!

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

awareness and most importantly support for patients and caregivers. Their ability to provide reliable information and understanding is second to none.

Ways to make it better...

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

ensure more people were aware of its existence.

More feedback...

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

the respect it demonstrates for all participants on the board and the quick feedback people get.

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

top notch.

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

reach more people struggling with this disease while making more people aware of the importance of early detection.

Ways to make it better...

I had discovered this site prior to my treatment.

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

getting more financial support for the great work they do.

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

the people who work in this organization work incredibly hard to make sure both compassion and accuracy are first and foremost.

When was your last experience with this nonprofit?

2009

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