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July 24, 2009

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July 24, 2009

I was diagnosed with tonsil cancer in 2007. Before the tumor was removed, no one thought it was cancer. In my rural area, oral cancers are not that common and as a 48 year old, non-smoking, healthy female, I was stunned. Who the heck has ever heard of tonsil cancer?? Even today new doctors will ask me how on earth did I manage to get tonsil cancer. Shortly after my surgery, I found the Oral Cancer Foundation. What a wonderful source of information. I read as much as I could and began posting my questions on their forum. I learned many heathly non-elderly, non-smoking people get oral cancer. The tips and tricks I learned helped me support a speedy recovery. My focus on getting better was reinforced everyday and I never gave up hope. I knew exactly what to expect and how to best deal with my recovery. My husband often read over my shoulder. Without the OCF I would have been confused, angry, unprepared, and potentially had a different outcome (certainly I would have required a feeding tube). This is a great organization!

The Great!

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

my positive attitude and recovery. According to my doctor, I was an "ideal patient" because I was well informed.

Ways to make it better...

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

be very proud.

More feedback...

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

the opportunity to "meet" many wonderful people from all walks of life.

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

the best of the best.

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

support early detection. I waited 4 months before getting an evaluation because I was uneducated (as was my dentist).

Ways to make it better...

I didn't get cancer!

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

getting the recognition and support needed to help a growing population.

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

I am very grateful for OFC.

When was your last experience with this nonprofit?

2009

July 23, 2009

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July 23, 2009

I am a three-time Oral Cancer 'victim'. OCF has provided me with valuable information about OC and its treatments, given me a place to express my feelings and get support from others and finally, given me a place to provide support and information to newcomers to this disease.

The Great!

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

improved response to treatments in myself and others.

Ways to make it better...

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

not change anything.

More feedback...

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

the help I received and the help I have, in turn, given.

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

always helpful.

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

increase the sponsorship/grants to oral cancer research.

Ways to make it better...

I had found OCF earlier in my oral cancer experience.

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

national recognition.

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

this is the finest bunch of people I have ever met.

When was your last experience with this nonprofit?

2009

July 23, 2009

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July 23, 2009

I have had the pleasure and honor of writing several website articles, news releases and other communications materials for the Oral Cancer Foundation over the past year or so. I could not be more in awe of the commitment of the Foundation and its founder, Brian Hill, to promoting early detection of the disease and to serving as a vital resource to oral cancer victims and their families and friends. Before Brian created the Foundation, public awareness of this surprisingly common and fatal disease was extremely low, and victims had very little access to desperately-needed information and advice. All one has to do is talk with an oral cancer victim to appreciate what a spectacular job the Foundation has done in filling this void. Particularly impressive to me is how the Foundation's online forums brilliantly allow oral cancer survivors to provide insight, counsel and comfort to more recently-diagnosed patients. The pain and suffering these amazing people have experienced is exceeded only by their compassion for their fellow victims. What many people do not realize is how tirelessly Brian works on behalf of the Foundation. For Brian it is virtually a 24/7 obsession, and his wife Ingrid also volunteers a great deal of her time despite the fact that she works full-time elsewhere. Moreover, the Hills' personal financial commitment to the Foundation has been truly above-and-beyond the call of duty, particularly when you consider that Brian's impressive track record as an entrepreneur would make it easy for him to accept a high-paying offer to run a private or public company. The impact that Brian Hill and the Oral Cancer Foundation have made to date is probably impossible to measure. However, if you speak to Brian, it is clear that this impact pales in comparison to what will be accomplished in the years to come.

The Great!

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

the passionate feedback from oral cancer victims documenting the invaluable support the Foundation provided in helping them cope with their disease.

Ways to make it better...

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

hire additional support for Brian Hill so that he can reduce his hours to "only" 60 per week.

More feedback...

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

witnessing the wonderful spirit of giving back demonstrated by founder Brian Hill and the many oral cancer victims who are so eager to comfort other victims.

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

deeply passionate about the Foundation's mission.

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

significantly reduce the incidence of oral cancer, saving thousands of lives in the process.

Ways to make it better...

the Foundation had additional financial resources to better spread the word about its cause.

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

raising additional funds to help them do even greater things and reduce the financial burder shouldered by the Hills.

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

Brian Hill is an extremely special human being.

When was your last experience with this nonprofit?

2009

July 23, 2009

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July 23, 2009

When I was first diagnosed with oral cancer (Stage IV squamous cell carcinoma of the tongue at age 45, non-smoker) in April '08, a friend found the Oral Cancer Foundation for me through a Google search. The depth of knowledge on the website is incredible. Brian Hill and his staff do an amazing job of staying on the cutting edge of research and news regarding Oral Cancer and its aftermath. The OCF is also on the forefront of Oral Cancer awareness and funding research, as well as pushing for comprehensive screenings to catch this horrid disease in its early stages when it is most treatable and survivable. The other side of the OCF, is the incredible community of the forums. To be able to reach out, completely for free, to literally thousands of other Oral Cancer patients, to hear their stories and gain the wisdom of those 'that have gone before' has been and remains the most valuable piece of my journey to becoming whole again outside of my medical team. I don't know where I'd be without the support I've received and the incredible advice I've gotten on how to get through treatment and into as ‘normal’ a life as possible. The OCF has been a lifesaver for me and so many others.

Photos

The Great!

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

raising awareness and funding research.

Ways to make it better...

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

not do half a good a job as Brian Hill and his staff.

More feedback...

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

the wonderful community of patients and caregivers.

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

committed and dedicated.

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

figure out why so many 'low-risk' people are developing oral cancer.

Ways to make it better...

I hadn't had to be there in the first place.

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

FUNDING, FUNDING, FUNDING!

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

I'm one of the 'lucky ones.' My treatment left me with few visible scars and a very good quality of life. This isn't true for many patients. The hard work of the OCF can hopefully one day make this the case for many more patients.

When was your last experience with this nonprofit?

2009

July 23, 2009

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July 23, 2009

The Oral Cancer Foundation is a wonderful site providing quality information and support to oral cancer patients, survivors, caregivers and friends.

The Great!

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

the concern and support that the forum posters provide to each other.

Ways to make it better...

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

continue the good work that they are already doing.

More feedback...

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

the fact that this nonprofit has really helped us to cope with this life changing experience- oral cancer.

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

compassionate.

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

continue the mission on a broader scale.

Ways to make it better...

I had found this site earlier in our journey.

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

monetary support.

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

the Oral Cancer Foundation is informative, supportive and an excellent resource for cancer patients, survivors, caregivers and friends.

When was your last experience with this nonprofit?

2009

July 22, 2009

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July 22, 2009

My feelings for the OCF group is fantastic people. I get more good info in there than I do from my Drs. I have many Drs too but they just don't understand what we go thru. The members of OCF have been there and know the answers we need.

The Great!

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

My own life and problems with after affects of Oral Cancer and it's damages .

Ways to make it better...

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

Keep it as it was intended by Brian.

More feedback...

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

My meeting some great people from around the World.

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

Dedicated people.

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

Maybe help get a break thru for OC and it's causes.

Ways to make it better...

If I didn't have Oral Cancer is the only answer for this question..

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

Funding as to keep it moving and expanding.

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

Help us get the government involved.

When was your last experience with this nonprofit?

2009

July 22, 2009

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July 22, 2009

My husband was first diagnosed with Oral Cancer in July of 2005, but I did not discover OCF until he had a recurrence in July of 2008. They were my lifeline, literally. He unfortunately had another recurrence in April of 2009 and passed away June 6, 2009. I have met so many wonderful supportive people. I don't think I could have made it through without them.

Photos

The Great!

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

increased public awareness of Oral Cancer and the HPV connection.

More feedback...

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

the tremendous emotional support I have received.

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

spend it all on research and hopefully eradicate Oral cancer.

When was your last experience with this nonprofit?

2009

July 22, 2009

more

July 22, 2009

I found the Oral Cancer Foundation via a Google search. Scared and confused because of conflicting diagnoses of cancer, fungus, severe dysplasia and suspicion of cancer, and wanting this beast out of my mouth, I registered and sent a post to the foundation's Oral Cancer Forum. Within hours I received encouragement, suggestions where and how to find information about Squamous Cell Carcinoma, plus personal messages from dentists, survivors and others with real information on Oral Cancer. This well-organized site offers a wealth of accurate and up-to-date information. Kudos to its founder, Brian Hill, for keeping us well informed and armed against oral cancer. I got a definitive diagnosis at surgery (Stage 1 SCC), but the foundation and its team of experts kept my anxiety level manageable pre and post surgery.

The Great!

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

my outlook and expectations in dealing with oral cancer.

More feedback...

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

its ability to disseminate information in easy-to-understand terms.

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

prevent a lot of oral cancer!

When was your last experience with this nonprofit?

2009

July 22, 2009

more

July 22, 2009

An incredible resource for both patients and caregivers living with Oral Cancer. The site has credible information for people in all phases of dealing with Oral Cancer. I tell people about this site in every waiting room at the hospital! Thank you Oral Cancer Foundation for helping my family through a very difficult time.

The Great!

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

the lives of people who fight oral cancers of all kinds.

More feedback...

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

.

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

.

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

.

When was your last experience with this nonprofit?

2009

July 22, 2009

more

July 22, 2009

I was originally diagnosed with tongue cancer at age 24 in 2001. Back then, an internet search on oral cancer yielded nothing but a few clinical case studies and some gruesome pictures. It was a truly a lonely world for 24 y/o guy with an "old mans" disease. I quielty completed my treatments and returned for check-ups for 6 cancer-free years. Fast forward to 2007, I am devastated with news that my cancer is back with a vengeance, except now an internet search delivers me to the Oral Cancer Foundation. The collection of knowledge stored on this database, combined with the personal touch of a fellow survivor just giving the "you can do it" makes this website priceless. I don't know what else to say except that while this website cannot replace a team of doctors, it can absolutely make life more bearable at a time where it is very hard to see any light at the end of the tunnel.

The Great!

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

its timely, 24/7 assistance for those in need who are battling the Oral Cancer.

Ways to make it better...

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

I can't think of anything

More feedback...

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

This is a support group/enyclopedia of Oral Cancer/latest cancer news channel. All in one place where I feel 110% confident that only my best interests are in mind.

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

Amazing, strong, brilliant, selfless people

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

Support research and could provide more assistance to this small but desperate population of oral cancer sufferers

Ways to make it better...

I had found the site sooner

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

awareness and funding

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

I'd like to become more involved

When was your last experience with this nonprofit?

2009

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