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July 27, 2009

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July 27, 2009

What a wonderful and activly functional organization. I got more information and support from this ORG than all the other "Big Giant Cancer Orgs" Combined.

The Great!

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

My own experience.

Ways to make it better...

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

Attempt to provide Treatment Centers with promotional materials.

More feedback...

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

Responsive to the point of being nearly real time.

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

Fellow patients and survivors, well versed.

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

Research and provide resourse materials for sufferers.

Ways to make it better...

I had found them while in treatments

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

Funding

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

They are the MOST deserving Cancer Organization I have seen.

When was your last experience with this nonprofit?

2009

July 26, 2009

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July 26, 2009

This website and the OCF Forum have been an anchor as I have watched a dear family member struggle with oral cancer. I go to the site and read the posts every day. Even though I am not a registered member, the support,kindness and knowledge I have received from this site have made a world of difference for me

The Great!

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

the words, knowledge, support and caring of the many OCF posters. Thank you so much!!

Ways to make it better...

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

Reach out to more cancer centers to make doctors and health practitioners aware of this support.

More feedback...

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

Everything I have learned and in understanding we are not alone in this.

Ways to make it better...

I had known about the OCF a year sooner than I did.

When was your last experience with this nonprofit?

2009

July 26, 2009

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July 26, 2009

The Oral Cancer Foundation is not only helpful to so many people who have had the misfortune of being diagnosed with oral cancer but also to those people who are caring for a loved one who has been diagnosed with oral cancer. The Foundation provides support and advice from people who have actually been involved directly with the disease.

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

save so many people the heartache and pain of going through such a dreadful disease that it needs to lift the profile of this life changing cancer and make everyone aware of how fatal it can be.

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 26, 2009

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July 26, 2009

I found the Oral Cancer Foundation after my husband was diagnosed with a pre-cancerous lesion in his mouth. The members -- most of whom were dealing with far more serious conditions -- were extremely helpful in explaining what we were dealing with. When a more complete biopsy discovered a very-early-stage cancer, they were there again with advice and suggestions. The main part of the OCF site is filled with useful information on all forms of oral cancer, treatments, news updates, etc. It is truly "one-stop shopping" for anyone whose life is touched by head and neck cancer.

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

... the real sense of community and the accurate, unbiased information. In addition, OCF founder Brian Hill and the other moderators keep the message boards free of snake-oil salesmen, scam artists and spam.

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

expand its support for groundbreaking research (such as Dr. Maura Gillison's work with HPV) and for a campaign encouraging regular oral cancer checks during dental visits. Early detection does save lives. My husband's was one.

When was your last experience with this nonprofit?

2009

July 25, 2009

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July 25, 2009

I discovered OCF when I was first diagnosed with Base of Tongue cancer. I had many questons,and the info on the Foundation site greatly help me to understand my disease and treatment plan. Also, the posters on the Forums have extensive knowledge that have helped me through treatment and after treatment issues. They are a great support group and are an inspiration to me to keep a positive attitude.

The Great!

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

my personal experience with cancer.

More feedback...

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

The friends and support I got from this site, and the quality information that was available.

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

Help raise awareness of Oral Cancer which is starting to increase because of the HPV virus. Help fund research to increase survival rat es.

When was your last experience with this nonprofit?

2009

July 25, 2009

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July 25, 2009

I regret that I did not find the OCF website until 1 year after my initial treatment. My signature below on the Oral Cancer Forum explains my situation as every ones is different. The forum has been incredible for me, allowing me to ask questions and receive answers for any ongoing issues. Also it has put me in touch with many other wonderful people around the world. The work done by Brian Hill on this site is invaluable to anyone who has or knows someone who has this awful disease. I continue to visit the website now and again to give back and advise where I can and to keep up with the many friends made around the world on the Oral Cancer Foundation. “Leukoplakia biopsy dx 8/2006 SCC floor of mouth T3N0M0. Verrucous Carcinoma. 14 hour 0p- right neck dissection/excision/marginal mandibulectomy 9/2006, 4 teeth removed, free flap from wrist, no chemo/rad -trachy 6 days. 6 ops under general-flap issues last 24mths..last March 26th 2009.”

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

The help, information and love given to sufferers and caregivers alike.

When was your last experience with this nonprofit?

2009

July 24, 2009

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July 24, 2009

I have been a member of several nonprofit on-line forums and groups but the Oral Cancer Foundation stands out. it offers practical information for oral cancer patients, caregivers, and survivors about what to expect and how to cope with every stage of treatment and post-treatment. It offers access to and it supports cutting-edge and peer-reviewed scientific information about oral cancer. Finally, it provides support and compassion for those affected by oral cancer. It helpe me be a much better caregiver to my husband and I never felt alone.

The Great!

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

the outreach during oral cancer awareness walks in the information and medical screenings provided to underserved members of communities such as Harlem.

More feedback...

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

the quality of useful information for managing oral cancer treatment and the support and compassion given to those struggling wiyh this cancer

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

help prevent a large proportion of new cases of oral cancer by promoting Gardasil for both males and females and prevent many deaths through enhancing screenings leading to early detection.

When was your last experience with this nonprofit?

2009

July 24, 2009

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July 24, 2009

This site/foundation is the very best thing that I have encountered since my husband was diagnosed 11 months ago. There is a wealth of information, incredible support from it's members, and compassion/shared experiences to draw from. I so wish that this site was recommended when he first started treatment. It would have eliminated many days and nights of mental turmoil of living with this disease alone.

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 members are so supportive. They share real experiences that can be applied to our every day lives of living with cancer.

Ways to make it better...

I knew about this from the start of diagnosis.

When was your last experience with this nonprofit?

2009

July 24, 2009

more

July 24, 2009

A hat's off salute to the Oral Cancer Foundation and Brian Hill for providing the best information to oral cancer folks and their caregivers. From the new findings in articles to the informative and compassionate group email, the OCF provides a quality product. There is an overall positive tone, but it is not sugar coated. Real world experiences happen and the group works through it. There has been some outstanding stories from long term survivors that offer hope to many. The range of information from members is extraordinary.

Photos

The Great!

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

its helping a cancer person's spirits lifted.

Ways to make it better...

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

call Brian Hill and ask for his help. People matter. Brian is real people. Thanks for all your time and efforts.

More feedback...

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

the group discussions.

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

a survivor who hosted an event to raise funds. Folks came to VA Beach and celebrated life... and there were medical folks there to teach us new stuff. it was a beautiful day that i will remember for years.

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

give Brian Hill a break from beating the bush for $$. Then ask their fantastic board of doctors and oral cancer victims and caretakers how to use the funds.

Ways to make it better...

i had learned of the organization earlier.

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

reaching the public and raising awareness of the growing number of oral cancer folks. its not just a disease of old smokers and drinkers. it is becoming an increasing problem among younger folks due to the HPV virus.

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

i really appreciate the long term commitment of Brian Hill in his efforts to help. He doesn't seek fame, he quietly contributes his talents for the betterment of us all.

When was your last experience with this nonprofit?

2009

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