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Susan2992 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Susan2992

April 29, 2013
1 person found this review helpful

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1 previous review
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... more

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

Fearless - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Fearless

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

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

mwgermann - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

mwgermann

April 15, 2013

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April 15, 2013

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.

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

Emily61 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Emily61

April 13, 2013
2 people found this review helpful

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April 13, 2013
2 people found this review helpful

I found OCF when my mother was diagnosed with oral cancer some years ago. The support and information I received from the members was phenomenal. They truly cared about what we were going through. I found myself on the board daily updating my new friends, encouraging others and scouring the website for vital information, which was easily accessible and extremely informative. Had it not of been for OCF, I'm not sure how I would have made it through our journey all alone!

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Unsure

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

ray1971 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

ray1971

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

Janis J. - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

Janis J.

April 12, 2013
1 person found this review helpful

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April 12, 2013
1 person found this review helpful

I am righting this for my friend Lisa Petersen who was diagnosed with Stage 3 squamous cell carcinoma....cancer of the tongue in 2010. After a very short battle with this disease, she lost her life at 41 years old. Lisa was determined to speak, but cancer silenced her words. Cancer has not silenced her voice..... During her fight, she contacted the Oral Cancer Foundation, and found support with two wonderful women dedicated to this organization, Christine Brader and Susan Lauria. They showed so much support for her while she was ill. Lisa was so full of life even though her body was failing from this disease. If Lisa was alive today......she would be righting this to support the Oral Cancer Foundation. She wanted to do a walk with Chrisine Brader in her future, which never happened. I have become Lisa's Voice to help spread the awareness of this silent deadly disease. Through the help of Christine and Susan I held Lisa's Voice Oral Cancer Awareness event to support the Oral Cancer Foundation. I would give this organization 10 stars!!!! So many hardworking volunteers and the dedication is unbelievable. The dental communities across the US and other countries give the OCF total support. Cancer was not in Lisa's plan for her life, but if she was here today, she would be righting this.

More feedback...

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

PatCey - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

PatCey

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

jlpro - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

jlpro

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

clroser - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

clroser

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

963hli - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

963hli

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

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