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319 Reviews
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October 21, 2010
1 person found this review helpful

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October 21, 2010
1 person found this review helpful

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.

February 28, 2010
1 person found this review helpful

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February 28, 2010
1 person found this review helpful

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

August 1, 2009

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August 1, 2009

I am a Oral Hygenist. One of my patients referred me to The Oral Cancer Foundation site to learn more about the increasing occurance of oral cancer especially in younger people. This site was extemely informative. I have had many discussions with the Dentist I work for since then. Early detection is critical.

The Great!

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

upgrading our examinations of patients for oral cancer during routine checkups and cleanings.

More feedback...

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

is the technical information for clinicians.

When was your last experience with this nonprofit?

2009

August 1, 2009
1 person found this review helpful

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August 1, 2009
1 person found this review helpful

I am a dental professional that is very familiar with the oral cancer issue in the US, including the reasons that the disease is too often found late, and the impact of this fact on both survival and treatment related morbidity, as well as long term quality of life issues for patients. I have watched this small organization from its inception, and am amazed at how much it is able to accomplish with a mostly volunteer based staff, significant lack of funding, and significant obstacles in its path that are both political/professional related and science based issues. Many of the impressive list of achievements that OCF has racked up, are the result of innovative use of technology platforms that are effective and cost efficient, combined with highly creative approaches to accomplishing its mission and tasks by the management of the organization. The behemoth cancer organizations that take in hundreds of millions of dollars a year could learn something from this micro funded non profit. My guess is that if someone matched end result metrics dollar for dollar between OCF and any of the large organizations, they would become supporters of this entity as the best opportunity for their philanthropic investments. I have, before writing this, reviewed several organizations and the many comments made about them. One thing seems obvious to me. The 150+ reviews of this organization at the time of my writing come predominantly from people who have been served by OCF, and when looking at other larger organizations, volunteers, donors and staff dominate the reviews. That tells me a lot, and why I decided to take the time to write this review. These guys are in the trenches with those in need, and get the job done. The postings from those served are decidedly heartfelt, and as passionate as OCF itself. I have attended a lecture given to research professionals, in which OCF's founder was one of the presenters. I was impressed with his grasp of the complexity of the science of the viral etiology of the disease. I was even more impressed that his depth of understanding allowed him to speak without notes or the crutch of a PowerPoint presentation for two hours, but none of that compared to his passion. To a room full of scientists and researchers he brought the too often missing human component to the presentation, in a manner that was the combination of patient insight and a tactful "call to action" to those in attendance. Imagine my surprise after listening to someone delve the complex nature of oncoprotein messengers ability to alter cellular function, to find out that he was a lay person with a high school diploma. What this organization lacks in infrastructure it makes up in the development of strategic alliances. What it lacks in raw dollars to get their message out, it makes up for in creative and innovative approaches, often convincing celebrity spokespeople to deliver its message. What it does not lack in, is a true passion to serve the needs of others.

Photos

The Great!

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

pushing the dental profession to be more engaged in the early detection process, and championing a little noticed viral connection to a relatively unheard of disease, into the public spotlight

Ways to make it better...

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

hope that I could do as much with so little

More feedback...

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

watching their ability to effect change in the professional sector

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

knowledgeable and passionate

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

it would be unstoppable

Ways to make it better...

could not have been

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

getting on the radar of an corporate sponsor, philanthropic organization, or donor angel that will realize what potential there is within them

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

The big guys should try to do it this well.

When was your last experience with this nonprofit?

2009

July 31, 2009

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July 31, 2009

This Organization provides up to date information on all aspects of oral cancer, including scientific as well as patient and recovery oriented issues

Ways to make it better...

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

Pretty much leave it as it is

More feedback...

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

The caring people

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

Very caring and helpful

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

Definitely do more. Money well spent!

Ways to make it better...

I had known about this earlier

When was your last experience with this nonprofit?

2009

July 31, 2009

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July 31, 2009

I understand this forum was very helpful for one individual with an afflicted family member. Support services are always needed in such times.

More feedback...

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

Support outreach progams to provide assistance to members and family members which need support in their time of uncertainty. Support and outreach programs are essential for family members and afflicted individuals. Providing understanding and expectati

When was your last experience with this nonprofit?

2009

July 30, 2009

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July 30, 2009

As a dentist in private practice I know the importance of having frequent reminders to routinely screen every single patient for signs/ symptoms of oral cancer. Thank you for the great work and helping an noble cause.

Photos

Ways to make it better...

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

More feedback...

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

care about the work they do.

Ways to make it better...

they were on the east coast

When was your last experience with this nonprofit?

2009

July 30, 2009

more

July 30, 2009

As a private practicing dentist and lecturer oral cancer I had the great fortune to stumble on the OCF website several years ago. The quality and level of knowledge that was directed toward both the healthcare professional and the public, especially to those individuals afflicted with some stage of the disease process, was extremely impressive. The dissemination of this accurate up to date information is curial on this “Forgotten Disease” and what I found on the OCF website immediately motivated me to become a member and volunteer to assist the OCF to do whatever I could to make a difference. The very small original OCF lapel pin I received for my membership is one of my prize possessions, which I wear proudly to help promote discussions about oral cancer and the OCF, as awareness is how a positive difference will be made. A few years later in 2005, I was again fortunate, and had the opportunity to meet and get to know the founder and executive director of the OCF, Brian Hill, a survivor of Stage 4 Oral Cancer himself. His tireless energy, dedication, and perseverance to promote awareness, sensitivity, and research is truly remarkable and a model for us all and has been an inspiration for me. As a presenter on clinical evaluation, case management, and oral cancer; the key point I always start and end all of my presentations with is that the OCF the most value resources they have and the OCF website is also a valuable resource for their patients and their families. If they only learn that fact they have greatly benefited from the course. Society’s awareness of oral cancer is how this disease state will be changed. Brian Hill and the people of the OCF are making a positive difference. The more assistance we can give to the OCF, the sooner we can move this terrible disease process in a positive direction. I have never seen an organization with so little resources do so much. THE OCF IS MAKING A DIFFERENCE

The Great!

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

raising the health professional awareness and knowledge which is leading to earlier discovery of the disease. Patient’s being comforted by peer to peer experience and information sharing.

Ways to make it better...

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

keep doing the same things that Brian Hill is doing.

More feedback...

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

having a place to refer healthcare professionals, patients, and their families to for accurate up to date information. Knowing that there is a place to refer patients to for quality peer to peer support that is accurate and relevant.

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

The people of the OCF are the most dedicated to changing a disease state and compassionate and reassuring to the patients that I’ve ever experienced. Brian Hill's dedication, and perseverance is truly remarkable.

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

change the state of a type of cancer that is common, but virtually unknown, by rising the awareness to it and the risk factors that cause it. This would enable early discovery of the disease process, by routine, low cost, non invasive screening.

Ways to make it better...

if the OCF had the funds to spread their knowledge through out the general public and the oral health community.

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

the lack of exposure and funds.

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

THE OCF IS MAKING A HUGE DIFFERENCE!!

When was your last experience with this nonprofit?

2009

July 30, 2009

more

July 30, 2009

I came to work for OCF from a well known surf brand. I specialize in everything "web 2.0" aka Social Media. At the foundation I spread awareness reaching out to those in need of aid and those who maybe never heard of oral cancer. The largest challenge that we face are the lack of people screened annually for oral cancer- which in turn equals to the lack of people that are aware. As stated on the OCF website- one person every hour of every day dies from oral cancer. No one is excluded from that statistic, even if you don't smoke. Before working with OCF, I had no idea. What many people do not know is that OCF's ability to help people does not stop with oral cancer. I have never had oral cancer. I haver never had a family member with oral cancer. I have never even had a close friend with oral cancer... but OCF has helped me. This foundation, the founder, the volunteers and the people on the forum have all helped to make me a better person. I have spoken to people who have survived oral cancer, are going through oral cancer, have recently been diagnosed with oral cancer and have lost loved ones from oral cancer. Hearing their stories gives me the momentum and pushes me to fight harder everyday to help them and prevent anyone from having to go through this. The experience I have working at OCF is truly priceless and has made me cognizant of the importance of helping others. Because of OCF I go to sleep every night proud of who I am.

More feedback...

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

Being given the opportunity to help people in need.

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

Wow $10 million, OCF could do a lot but the most influential would be to have the ability to plant awareness of oral cancer in every American's mind. Survival comes with early detection and 10 million would drop the death rate down a lot.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

The Oral Cancer Foundation provides many helps to communities around the US to raise the awareness of Oral Cancer. Their walks help involve many and raise money for needed research and imortant information. It is very helpful to have an organization as well informed, active, and caring as the OCF involved in helping patients and professionals.

The Great!

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

The web site provides up to date, quality information that helps people understand how to deal with oral cancer and how to help avoid it.

Ways to make it better...

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

Keep up all the efforts they are doing

More feedback...

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

the caring way they support people suffering with oral cancer and its effects.

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

Everyone at the organization is wonderful and dedicated to helping others.

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

Save a lot more lives and give relief to many more people.

Ways to make it better...

They are doing great!

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

Raising awareness of the disease

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

This organization is fdeserving of the highest accolades for their efforts.

When was your last experience with this nonprofit?

2009

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