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The Oral Cancer Foundation
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

MY ROLE:
Volunteer & Keep 'Oral Cancer in the News" section of website up to date.