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July 29, 2009

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July 29, 2009

I found the OCF site 15 years after I was diagnosed and treated for squamous cell tongue cancer. My diagnosis had come as a complete surprise, as I had never smoked and had been told by multiple doctors that I was not at risk for oral cancer. Long after my experience with it, I was actually looking for good resources for a couple of friends who had been recently diagnosed, and was amazed at the amount of current, relevant information that OCF had to offer -- far beyond what I could find on other cancer-related sites. If anything like this had existed when I was undergoing treatment, it would have been an enormous help and support to me. As someone who went through major oral surgery and weeks of radiation without the benefit of OCF's support network, I can appreciate how much this site can provide to someone facing this disease.

The Great!

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

the way it has allowed people from all over the world to share their questions and their experiences with oral cancer and to strengthen their resolve to fight it.

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

unselfish, and deeply concerned about the problems of those on the forum who needed to 1) get an accurate diagnosis, 2) make an informed decision about treatment, and 3) deal with the pain and other side effects of battling this illness.

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

do an even better job of helping more people to recognize the early warning signs and hopefully get a timely diagnosis to improve their chances of long-term survival.

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

I joined the OCF Survivor Forum in November of 2002, well before my treatment started, and the members of the forum there, and also information on the main site, helped me in ways that are unmeasurable. I have made many friends in all areas of the world and stay in touch with many of them to this day. Back in November of 2002 there really weren't any other oral cancer sites like OCF and there still isn't today. I have been honored to give back on the forum, what was so freely given to me. It has been a life altering experience for sure. I am certain that advice that I received there has helped me to survive the horrors of cancer treatment and it's aftermath. I have 6 years of being cancer free today and OCF was a major part of that. Conversely, it saddens me that I have lost so many friends to this horrific disease.

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The Great!

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

feedback frrm people that have been helped.

Ways to make it better...

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

go crazy fighting an uphill battle all of the time for funding.

More feedback...

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

the diversity of people and cultures and the commonality of our plight.

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

compassionate, caring and dedicated to serving others.

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

fund basic cancer research.

Ways to make it better...

less people had died.

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

finding the funding to keep it alive.

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

The forum has grown by over 6,000 members since I joined.

When was your last experience with this nonprofit?

2009

July 26, 2009

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July 26, 2009

I found the Oral Cancer Foundation 2 years after my diagnosis. When I finally found the site it changed my life. Talking to people on the survivor/patient forum made me realize, not only are there thousands of people going through the same thing, it made me realize I could actually someone. I was lucky enough to actually meet some of the people in person and I feel blessed to have done so.

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

Talking to other people on the survivor/patient forums. It has changed my life in ways I cannot describe.

When was your last experience with this nonprofit?

2009

July 24, 2009

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July 24, 2009

As a two time SCC oral cancer survivor diagnosed in 1997 and 2001, I can tell you I know the fear of going this road alone as there were no support groups out there for this kind of cancer. I joined the OCF in May of 2001 and have been seen the help that this charity brings to both patients and caregivers and their families. It has even managed to save a few lives but stopping a caregiver from cutting pain patches or getting someone to the ER in time. Here are a group of compassionate, well informed people who have been down this road and are willing to help you on your journey. Besides the marvelous forum, there is a large resource section on the web site wityh information on oral cancers, its treatment, side effects, dental issues, best hospitals, etc. and two search engines to help you fins what you need. There are lasting cyber friendships formed on the forum and the emotional suppsort is beyond my words. I never knew how much my cancer had affected my husband until we flew to Vegas to meet twenty some other patients and caregivers. He came home knowing he wasn't alone in his fears abd feelings and a much calmer man. Meanwhile, the founder of this charity, is out beating the bushes at conferences and government agencies to get better funding for this cancer and to get the word out that 'EARLY DETECTION SAVES LIVES'. One of the best charities going.

The Great!

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

helping both caregivers and patients through this horrible journey by sharing information on side effects, both emotional and physical.

Ways to make it better...

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

I would hire or find an effective fund raiser to find a corporate sponser to pay for the website. Many of the expenses of this charity are funded by the founder.

More feedback...

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

is being able to help others from my experience. If I can at least that fear of the unknown, I feel I have helped.

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

most dedicated, compassionate I know. They are also very well informed.

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

sponser more research into causes and cures. So many oral cancer patients die unnecessarily because they are misdiagnosed. With HPV now a facter and even teens having oral cancer, doctors need to realize this is no longer an old man's disease.

Ways to make it better...

had this organization existed whne I was diagnosed.

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

fund raising.

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

It is too bad that all cancers do not have a website like this. The forum format is the best I have seen. Sites like this should receive some government funding.

When was your last experience with this nonprofit?

2009

July 21, 2009

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July 21, 2009

The second biggest help outside of my family, friends and co-workers was the Oral Cancer Foundation website and the Patient/Survivor message board contained within. The information contained on this site is squarely focused on Head and Neck Cancers. The message board is chock full of information, assistance and support, given by people who have gone through or were currently in treatments for this cancer or caregivers helping someone with cancer. Each person there has been touched by the effect of this grossly disgusting disease, from young to older adults, from all over the world.

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Ways to make it better...

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

More feedback...

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

The total quality of information presented for Head and Neck Cancer patients. One can learn what to expect from various treatments, ask questions, and receive suggestions for questions to ask their own doctors

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

professional, straight forward and willing to share their knowledge and experience.

Ways to make it better...

I had found this organization earlier in my own treatment

When was your last experience with this nonprofit?

2009

July 20, 2009

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July 20, 2009

I live in rural Vermont. When I was first diagnosed with oral squamous cell carcinoma, I began searching the web looking for information and support. Fortunately for me, I found the Oral Cancer Foundation. I posted my situation on the patients/survivor forum and was moved to receive immediate caring responses and support. All of the responses advised me to go to a big city with a comprehensive cancer center for proper treatment. I followed this advice and it probably saved my life. The local hospital told me I had clean margins. The Mass Eye and Ear Infirmary's pathologists were convinced my margins were not clear and recommended radiation therapy, which I received. Throughout the process, I communicated regularly with other patients and survivors on the OCF's bulletin board. I was and remain extremely impressed at the compassion and support that is expressed there. Make no mistake, this is a terrible disease and victims of it truly suffer. However, the suffering, anxiety and dread are alleviated and mitigated by the wonderful community that has formed at this foundation. I now help to keep a section of the OCF website up to date. That is the oral cancer in the news section and I regularly try to post articles of interest to both the lay and professional readers of this web site. I feel like it is a small way to repay the debt I owe to this foundation.

The Great!

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

advocating the importance of early detection of oral cancer.

Ways to make it better...

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

try and continue the extraordinary committment and professionalism of Brian Hill and the OCF's team to providing relevant, important and accurate information about oral cancer..

More feedback...

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

the sense of community that has developed over the years with other cancer survivors.

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

professional, knowledgeable, compassionate and dedicated.

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

sponsor free screening, particularly in disadvantaged communities. Oral cancer affects minorities more than whites. Supply clinics and other public health organizations not only with training but also equipment like Velscopes and other detection devices.

Ways to make it better...

There's no way I could have had a better experience.

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

generating enough funding to promote their campaigns for regular checkups, prevention and early detection.

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

I've volunteered for a number of non-profits. This is the most efficient, dedicated and compassionate one that I've come across.

When was your last experience with this nonprofit?

2009

July 20, 2009

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July 20, 2009

The Oral Cancer Foundation's website is full of information for oral cancer patients and their caregivers. Its founder, Brian Hill created a place where questions can be asked and support is shared. This is especially helpful to newly diagnosed patients who face fear and uncertainty. Its a very scary time and so many do not understand all the medical jargon and knowing which doctor does what. The Oral Cancer Foundation has saved my life. I found the site right after I was diagnosed with my first round of cancer. The forum members embraced me and helped me thru my treatments. They were there with me when I had my first recurrance less than a year later. The same warm, caring, knowledgable people are still there helping me now with my thrid round of cancer. I have met many of these special people in person and am proud to call them my friends. One story that shows how wonderful a site OCF is. A woman joined and said she did about 10 or her radiation treatments and couldnt continue due to the severe side effects. This woman had several young children that depend on her. Jointly thru encouragment and examples we got her to return to her treatments. She was so touched by all the responses and kindness of strangers she went back to finish her radiation.

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The Great!

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

more people knowing about this type of cancer. New members finding help and finishing their very difficult treatments.

Ways to make it better...

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

not change one thing. Brian Hill has created a wonderful organization that helps so many and spreads correct info about oral cancer.

More feedback...

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

the forum gives so much support to people who need help.

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

the best people in the whole world. They are so kind and caring and reach out to help others when they need a hand.

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

help find a cure for oral cancer and make doctors and dentists aware of what to look for. All patients would be checked when they have a dental exam or even a physical.

Ways to make it better...

there was more money dedicated to helping OCF and oral cancer patients. Of course the ultimate goal would be to cure this disease so others wouldnt suffer.

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

not enough money.

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

OCF is the best place for any oral cancer patient to find help and info.

When was your last experience with this nonprofit?

2009

July 19, 2009
1 person found this review helpful

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July 19, 2009
1 person found this review helpful

The Oral Cancer Foundation is saving lives and the founder, Brian Hill, is one of the most hard working and selfless people I know. I have witnessed Brian tirelessly guide family members through difficult times, organize events to generate funds and educate others in order to end this deisease.

The Great!

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

raising awareness so that people are getting tested and dental offices are now informing patients of their options.

Ways to make it better...

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

try ot get even more people involved.

More feedback...

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

seeing the passion in making a difference in people's lives.

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

all willing to do whatever was needed to promote the cause.

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

help end new cases of oral cancer. With early detection we can stop oral cancer.

Ways to make it better...

I was able to secure more donations for OCF.

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

generating enough funds to put towards public awareness campaigns.

When was your last experience with this nonprofit?

2009

July 18, 2009

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July 18, 2009

As an advisor to OCF and working within the dental profession for over 33 years, I have been touched by the many individuals who have turned to OCF when they needed help. OCF is the organization who steered many patients toward the right treatment center, the best doctors, and the absolute best advice for their individual situation. Brian Hill (Founder of OCF) is a champion, a survivor, and truly the most dedicated person I have ever met. I wish OCF continued success in all of their endeavors so their great work will continue.

More feedback...

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

the creativity, diligence, and hard work of the leadership within this organization.

When was your last experience with this nonprofit?

2009

July 18, 2009

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July 18, 2009

Although I did not find the Oral Cancer Foundation until I was home recuperating from my tongue surgery, I have found it to be a way for me to expand my commitment to early detection of oral cancer. As a dentist and an oral cancer survivor, I have found myself in a very unique situation. Since joining the OCF in April of 2005, I have found a new meaning to the term "helping others". The number of people from all walks of life that spend hours of their precious time helping others get through this dreadful disease, is boundless. My OCF "family" have allowed me to meet some of the most generous people in the world. From Brian Hill, the founder, to people in my own neighborhood and people around the world, the OCF forum provides a place for us to gather and help and support survivors, as well as family and friends of oral cancer patients. Being a member of the OCF has spurred me on to be more pro-active in oral cancer awareness, than I ever was before. I have run 3 oral cancer screening events, written articles for local and national dental magazines, aimed at getting dentists to incorporate oral cancer screenings in their offices. I have been the top fund raiser for the OCF cancer walk in Harlem, NYC for the last 2 years. I will also be a speaker at a walk and fund raiser for the OCF this coming September. I try to get to the forum at least once a day looking for ways to use my background to help others. Many people, even the members, are not aware of the vastness of the OCF website. There is no other site that comes close to having the content that the OCF website has. Just looking at the home page, www.oralcancerfoundation.org, and the list of links there, will give anyone an idea of how much content is available. The Oral Cancer Foundation website truly is the only place to go for the "answers to questions, advice, support and inspiration".

The Great!

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

that daily visits to the forum show me that this world is filled with caring and generous people that are willing to share some of the most intimate details of their experiences with oral cancer, in order to help others.

Ways to make it better...

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

continue it exactly as Brian has done.

More feedback...

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

that it has given me the opportunity to help others in ways that I never dreamed I would be able to do or be capable of doing. I have made friends around the world and have had the opportunity to meet some of them in my travels.

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

from the founder, Brian Hill, to the volunteers and paid staff, there is no other organization that I have come in contact with, that has had a more profound effect on my life. I am blessed to have met Brian Hill in person and to call him my friend.

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

add even more than it already has to the world's knowledge about oral cancer. It amazes me as to what Brian et al have accomplished so far and I can't even imagine what could be done with such an amount of money at it's disposal.

Ways to make it better...

there is nothing that could make my experiences with the OCF any better.

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

MONEY, MONEY, MONEY !!! It breaks my heart to read about it's founder auctioning off some of his personal belongings to raise capital to keep the OCF afloat. In these terrible economic times donations to the OCF as well as all non-profits have been hit.

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

I wish that I could do more for the OCF and raising the awareness of oral cancer. Having just sold my dental practice (yesterday), becoming semi-retired until the end of the year, I can see this goal being attained sooner, rather than later.

When was your last experience with this nonprofit?

2009

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