1 person found this review helpful
The Oral Cancer Foundation
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April 8, 2013
1 person found this review helpful
Congratulations to the Oral Cancer Foundation and Brian Hill for providing accurate information to oral cancer patients and their caregivers. Also to the administrators who show immense compassion and dedication to the forum and the giving of their time voluntarily. The news area is always at the forefront of providing the latest up to date articles and information.
As a 6 year plus survivor I still come here to offer help where I can. I am still being monitored for pre-cancerous issues that show up in yearly biopsies so will also keep coming back with any questions and support that I may need.
The range of information and support from members is extraordinary.
Gabe
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 7, 2013
1 person found this review helpful
I found OCF while recovering from treatment for Stage IV Squamous Cell Carcinoma, BOT in 2003. I have met many people that have or will experience the complexities of treatment and the brutality/toxicity that brings with it new challenges. OCF is not only a community of survivors and caregivers but the most informative site for all facets of oral cancers.
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
July 28, 2009
When I was diagnosed with Stage IV Oral Cancer in 2003 my life changed and honestly, it has not stopped changing. I have yet to find my "new normal" as we call it. I became active on the forums that were provided by the Oral Cancer Foundation and met literally thousannds of people that had experienced pretty much the same thing as me only with personalized time frames. As trite as it may sound, I don't know how I would have made it to where I am today without the resources, the friends and the incredible website Brian Hill self-funded to start it up. I go to Health Fairs and represent the Oral Cancer Foundation and if I was in a little better health presently, I would be organizing a walk to raise money during Oral Cancer Week next April.
The Great!
I've personally experienced the results of this organization in...
Bringing people from all over the world to one place that is the singlemost comprehensive resource website for oral cancer as well as providing a place where hundreds walk through the cancer journey with you, letting you know what is around the corner.
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...
The tenacity of Brian Hill and how he singlehandedly made this happen with hundreds of thousands of dollars out of his pocket to promote early detection which increases your chances of survival from 25% to 90%.
The kinds of staff and volunteers that I met were...
Incredibly devoted to helping people with this horrible disease and willing to put in the hours needed for nothing in return, monetarily.
If this organization had 10 million bucks, it could...
Reduce the death rate of oral cancer significantly. In addition, more research could be directed towards early detection and treatment alternatives.
Ways to make it better...
Brian Hill had an entire staff instead of an army of one for so long and financial backing.
In my opinion, the biggest challenges facing this organization are...
The low incidence rate of oral cancer versus breast cancer, for example. It is hard to fund and support groups that are trying to get the word out on early detection and keep up with treatment technology when there are only 35,000 "victims" a year.
One thing I'd also say is that...
My life was transformed by finding the Oral Cancer Foundation.
When was your last experience with this nonprofit?
2009
April 7, 2013
2 people found this review helpful
This forum saved my partners life and my sanity. The posts are made by the patients going through treatment, the survivors of treatment and the caregivers facing issues of their own. The forum is moderated, so the information is factual (as far as non medics can make it), honest and supportive. Three years on, I still visit the site to share our experience with newly diagnosed people to payback the extraordinary support and information I received when A and I were going through it. Every head and neck cancer unit should have this forum on their list of resources.
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
December 14, 2012
As a carer for my partner afflicted with oropharyngeal cancer, this site became my lifeline. The information provided is 1st class, the support from other survivors and carers who "get it " is invaluable, and the opportunity to explore options and present them to our healthcare providers saved my partner's life.
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?
2012
1 person found this review helpful
April 7, 2013
1 person found this review helpful
OCF is the best resource available online for all people wanting to know more or are dealing with oral cancers. It is focused on this type of cancer and has many VERY first person experiences about all facets of diagnosis, treatment, and post treatment stages.
You get the real deal here: no sugar coating, over the top high fives, or lack of scientific and medical substance. You can be assured what is being posted is backed up by real experience or references to clinical trial results or other reports published by professional peer review journals.
Brian, Eric, and other key forum members are always watching and weigh in on topics that can use the voice of wisdom and experience.
More feedback...
Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2013
April 6, 2013
I cannot say enough about the Oral Cancer Foundation and what it has meant to me as a survivor. I check into the survivor/patient forum every day. The medical information is easy to understand and the people who participate are some of the most amazing people I have ever met. It has helped me to realize that I am not alone. There are no support groups for oral cancer in my area, and this is one way for me to share my feelings and find out that others are going through the same thing. My only regret is that I did not discover this site until after I had completed my treatments.
More feedback...
Will you volunteer or donate to this organization?
Likely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2013
1 person found this review helpful
April 5, 2013
1 person found this review helpful
As a Dental Hygienist, The Oral Cancer Foundation is invaluable to me. Just this week a patient was diagnosed with Oral Cancer. Our office was able to give the family a packet of information, that will aid them enormously during this time. It was all taken from The Oral Cancer Foundation website.
The Oral Cancer Foundation allows dental professionals to stay educated on the latest research and information on Oral Cancer, and pass this on to our patients. Because of OCF sponsoring April as Oral Cancer Awareness month, and supporting offices nation wide, as they offer free Oral Cancer screenings during the month of April, we are able to reach the local community and provide screenings to those who might not other wise receive a life saving screening.
Additionally, the OCF awareness events held across the country throughout the year, provide another avenue to reach out to the local community in raising awareness and providing screenings.
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
1 person found this review helpful
April 5, 2013
1 person found this review helpful
The survivor/ patient forum is amazing. The mentorship and advocacy is unparalleled.
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?
2005
December 14, 2012
1 person found this review helpful
As a survivor, the Oral Cancer Foundation, was there for me to help navigate the whirl wind of appointments. I recommend OCF to many others who I meet who are dealing with oral cancer.
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?
2012
July 26, 2009
I found the Oral Cancer Foundation after I was diagnosed the Squamous Cell Carcinoma of the tongue. I was very depressed and discouraged about the diagnosis. The members of this site and forum were very encouraging and helpful to guide me direct me to where I needed to go. If I had not found this site I am not sure how i would be feeling today. The main part of the site is full of information about head and neck cancers. I will often go back to the main site and reread articles I have read to make sure I did not forget something. I will be forever grateful to OCF.
The Great!
I've personally experienced the results of this organization in...
I've seen results in my personal life. OCF has play a huge part in the emotional healing part of my life.
Ways to make it better...
If I had to make changes to this organization, I would...
More feedback...
Ways to make it better...
I couldn't have had a better experience.
When was your last experience with this nonprofit?
2009
December 14, 2012
1 person found this review helpful
My husband is a 3 time Oral Cancer Survivor and this website has been a life-line for me. In the first bout, I went to the site nearly everyday, finding answers to my questions regarding his sickness. The others who had already been through, or were currently going through treatments were full of information and tips and tricks on how to make life easier for the patient. We are active in the OCF community and have made quite a few virtual friends through it, but we have also gained some real friends. Because of the information on the site we were able to take part in our first oral cancer walk in Seattle, WA. We live on the other side of the state and we gathered more than 20 friends to caravan over to Seattle and participate in the event. Our team raised nearly 10,000 and thankfully we know that the greatest portion possible is used for awareness campaigns and research.
More feedback...
Was your donation impactful?
Likely
How likely is it that you would recommend that a friend donate to this group?
Definitely
How likely are you to donate to this group again?
Definitely
When was your last experience with this nonprofit?
2012
July 21, 2009
1 person found this review helpful
The Oral Cancer Foundation is an amazing group of individuals that have experienced through thier own battle, or through the battle of loved ones the devestation and victories of Oral Cancer. My husband was diagnosed in 2005 as a 33 year old man. As his cancer is very rare in his age group, there was not a lot of information available as to it. Through the OCF I was able to research and be apart of a community that had experience in this disease. There were others going through the same caregiving tasks as me, and we were able to connect and give eachother support. I really appreciated the amount of knowledge that was present. I have seen that OCF has been doing a steady job of increasing awareness of this disease.
Photos
The Great!
I've personally experienced the results of this organization in...
Increasing awareness about Tobacco use and in HPV connections to Oral Cancer.
Ways to make it better...
If I had to make changes to this organization, I would...
Be a mess- Brian Hill is one of the most amazing coordinators and has a real sense of this disease. I couldnt do anything better.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
The entire community and amount of knowledge and information available through the OFC.
The kinds of staff and volunteers that I met were...
I have only had communication via phone and internet. That would be Brian Hill and spoke via internet with many of the contributers to the site.
If this organization had 10 million bucks, it could...
Continue to make the public aware of Oral Cancer and it's contributing factors.
Ways to make it better...
If I hadnt experienced so many of the members die from this disease.
In my opinion, the biggest challenges facing this organization are...
Recieving financial support from the communities that it serves.
One thing I'd also say is that...
I have had amazing support, tons of information to bounce off my husbands doctors with and the knowledge that this disease affects all kinds of people. Old, young, smokers, non smokers, dentists, athletes and will forever be grateful
When was your last experience with this nonprofit?
2009
December 1, 2012
I have been coming to this site for over 6 years on a daily basis helping others that have not been where I have. It is truley the BEST oral cancer website IN THE WORLD.
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?
2012
May 25, 2011
1 person found this review helpful
I have been visiting this site for 5 years now and I still am learning about my cancer. The site is extremely user friendly; it's free and you can get an answer to any question or just complain about how you feel 24/7. I have talked to thousands of people over the years and have actually met many in person. The bonds you can create while helping one another whether you are the patient; the caregiver or a concerned family member are priceless. I truly believe that this site is as valuable as the physical treatment itself.
The Great!
I've personally experienced the results of this organization in...
Knowledge gained and helping others.
Ways to make it better...
If I had to make changes to this organization, I would...
find a cure for this cancer and eventually do away with this site.
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