The Oral Cancer Foundation
Invite reviews
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.
I just just gave a patient the news that her biopsy came back positive for dyslasia and possible early invasive squamous cell carcinoma in her mouth. I referred her to an excellent oral surgeon and to this amazing website. I suspect she'll be logging in before she meets with the surgeon, and I'm grateful that I could connect her to this resource. It's comprehensive scope and obvious commitment to providing understandable, timely, and reliable information to those who need it most of all, patients, is amazing. Thank you for being a solid link in the chain of care for this awful disease.
The Great!
I've personally experienced the results of this organization in...
my practice
Ways to make it better...
If I had to make changes to this organization, I would...
Look for more ways to make health care providers and patients aware of its existence.
Loved this site, as a Dental Hygienist. I realize more and more that my role is not only to clean the teeth, more importantly to check for oral cancer and save a life. I would love a video showing each step of a through screening process. Thank you Kim
The Great!
I've personally experienced the results of this organization in...
I can pass this site along to my pts! Thanks for being here-loved the slides showing oral lesions- very helpful!!
Ways to make it better...
If I had to make changes to this organization, I would...
More feedback...
Ways to make it better...
I would love a video showing each step of a throught clinical exam being done on a pt. As a dental professional, this could aid me in my examination- as well as prepare the pt.
How frequently have you been involved with the organization?
One time
When was your last experience with this nonprofit?
2010
Facing the possibility of having my bottom teeth removed following cancer of the tongue, I decided to try and find information about whether or not this was a good idea on the web. This is when I discovered The Oral Cancer Foundation. After posting the enquiry, I soon heard from Brian Hill (the founder) and Gary Allsebrook (a long standing member). They both offered excellent information, for which I am extremely grateful. Had I simply gone ahead without their advice, I could have ultimately lost my jaw bone. I cannot thank them enough for their comments. The Oral Cancer Foundation also provides an invaluable forum for people all over the world to be able to communicate with and learn from others who are undergoing similar experiences, or who have walked the same road. My only regret is that I did not find them earlier, as in so doing avoided what was a very lonely road.
More feedback...
If this organization had 10 million bucks, it could...
spread its reach much wider, and in so doing help so many more people.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
When my husband was diagnosed with Stage IVb throat cancer, i grabbed every pamphlet in the hospital. The foremost organization that offered information, education, and support was OCF. Exploring the website, i was immediately grateful to discover the widespread community, dove into the research and information available, and communicated with Brian Hill about how to give back in the future. My husband is now TWO YEARS ALL CLEAR from this disease, and we hold OCF as the clear leader in public information and outreach on this disease.
The Great!
I've personally experienced the results of this organization in...
nearly every facet of our facing this disease. I have spoken to the founder (amazing man!), i have read all the literature, I have benefitted from the information I had access to, and it helped in my husband's recovery and treatment.
Ways to make it better...
If I had to make changes to this organization, I would...
I would alter the language of the website, pamphlets, and educational materials to focus on the positive possibility of not only surviving but thriving after oral cancer. HOPE.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
the founder's personal commitment to be involved in all aspects of the foundation. He spends HOURS every day responding directly to patient inquiries and counseling patients one on one. utterly inspirational!
The kinds of staff and volunteers that I met were...
Brian and Megan, the only two staff, work tirelessly to spread the good word, the information, and resources.
If this organization had 10 million bucks, it could...
launch a national campaign to bring the same level of awareness to oral cancer as breast cancer. A simple screening could save lives, and hardly anyone knows they can still get oral cancer if they don't smoke.
Ways to make it better...
I had seen more HOPE in their messages. I was so traumatized by the statistics and possible horrors on the front page of the brochure or website that didn't seem balanced in stories of survival.
In my opinion, the biggest challenges facing this organization are...
funding to allow more staff. Brian is spending every waking moment handling the patient inquiries one on one, which likely puts a strain on his ability to lead a national campaign of advocacy. As it is, he does amazingly well with what he has.
One thing I'd also say is that...
Kudos to Brian and the organization he has established. Without it, there would be a huge empty space in the hospitals, where information, support, and advocacy are now.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2009
My husband was diagnosed with oral cancer on 8/13/08. Since that time, the OCF has been instrumental in lending their support and time to answer questions and give information to my husband and I. Their organization gave us extreme relief in knowing that there were others out there who could understand exactly what we were going through with the type of cancer my husband had. We are very grateful that Brian Hill founded this organization. He, especially, was a wonderful source of support and lended his time freely whenever we were concerned about something and had a question for him.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
the interaction with the people who understand what we were/are going through.
The kinds of staff and volunteers that I met were...
willing to offer their support during their personal time.
If this organization had 10 million bucks, it could...
educate and offer materials to every dental office in America about the importantance of oral screenings.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2009
I recently found the oralcancerfoundation web sight and only wish I had found it a year ago when I was struggling with my 55 year old husband's diagnosis of base of tongue cancer. I did not know of anyone with this type of cancer and have struggled over the past 10 months trying to educate myself about this disease and treatment modalities and the future. It is a very lonely cancer to have. Since finding this patient forum, I feel I finally have a place to go where there are others struggling with this type of cancer and it's devastating impact on quality of life. My questions can be answered by others who have been there. It has been a wonderful resource for followup questions and concerns This is a great organization but it has a huge task ahead of it: to educate the public and health care professionals about the increase in oral cancer, especially in those individuals who do not smoke or drink and whose cancer is probably related to HPV. Thank you, Nancy Mazzapica
The Great!
I've personally experienced the results of this organization in...
the information shared with others who are struggling with this cancer and desperately need information and support
Ways to make it better...
If I had to make changes to this organization, I would...
get more info to health care and dental providers about oral cancer, signs and symptoms, would leave web sight info at every cancer center dealing with head and neck cancer
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
talking with others who are experiencing or have experienced oral cancer
The kinds of staff and volunteers that I met were...
very heplful and available
If this organization had 10 million bucks, it could...
plaster the cancer centers and radiation centers with the web sight so pts and caregivers could communicate with others experiencing the same disease
Ways to make it better...
I had found this sight sooner
In my opinion, the biggest challenges facing this organization are...
visibility
One thing I'd also say is that...
I'm grateful i found this sight
When was your last experience with this nonprofit?
2009
This helped my friend a great deal. Her husband was greatly helped by this organization. I highly recommend it to anybody.
The Great!
I've personally experienced the results of this organization in...
My friend was very thankful for the help she received.
More feedback...
When was your last experience with this nonprofit?
2009
Four years ago I started a journey which I never would have believed "Could happen to me". It was frightening, painful, debilitating, and financially stressful. As I went through treatment (2 different bouts) and came through the other side of treatment I was assisted by others on the Oral Cancer Foundation website who had "Been there, done that" and could not only help but truly understand. The resources are great and the caregivers on the site also assisted my family members along the way with what to expect. I now try to give back by helping others through their treatment and battle with this horrible disease. THANK YOU OCF!
The Great!
I've personally experienced the results of this organization in...
The way everyone involved helps one another. There are no preconceived notions and the database research is kept currtent so members can make the best possible decisions.
Ways to make it better...
If I had to make changes to this organization, I would...
Continue the way it is.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
The help and encouragement I received and the assistance I've been able to give back.
The kinds of staff and volunteers that I met were...
Compassionate and generous.
If this organization had 10 million bucks, it could...
Spread the word about early diagnosis being the best defense.
Ways to make it better...
I would have found the site sooner.
In my opinion, the biggest challenges facing this organization are...
How to spread the word not only about the site but about the disease (And the great successes out there in fighting it).
One thing I'd also say is that...
This site is GREAT!!!
When was your last experience with this nonprofit?
2009
I could not have made it through my treatment for oral cancer, or the recovery afterwards, without the information I gained from the OCF website, both the research articles they have there and the knowledgable people on the patient/survivor board where anyone strugling with this disease can get GOOD advice (misinformation and bad advice is quickly caught and erased--another plus for them). Through OCF and the pother survivors who post on the board, I found doctotrs for a second opinion as well as an expert that could help me with swallowing problems I had after treatment. The people there that had already been through what I went through are the ones that kept me going.
The Great!
I've personally experienced the results of this organization in...
the huge number of patients who post on tbheir website when they are going through treatment
Ways to make it better...
If I had to make changes to this organization, I would...
keep doing the good job that is already being done
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
the chance to help others after I got through my treatment
The kinds of staff and volunteers that I met were...
everyone who works for this organization is wonderful but Brian Hill, who founded it and puts so much into it, definitely deserves an award!
If this organization had 10 million bucks, it could...
do a lot better job about spreading the prevention message (though they do a good job with what they have).I am someone who had a visible tongue tumor overlooked (twice!) by a dentist who should have told me to go to an oral surgeon and have a biopsy
Ways to make it better...
can't say anything here--they do a great job!
In my opinion, the biggest challenges facing this organization are...
funding. A lot of people donate during their treatment but then if they survive they don't keep giving.
When was your last experience with this nonprofit?
2009
Filter by reviewer role:
- Volunteer22
- Client Served95
- Expert13
- Public67
- Board Member0
- Donor4
- Advisor0
Support This Nonprofit
Help this nonprofit get more reviews
5 tips for getting reviews