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Pandora99

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The Oral Cancer Foundation
July 13, 2009

Alex: How do you get guidance, reliable information and survivor and caregiver support for a cancer, which is growing in number, but some think is "infrequent"? Well Alex, the answer is The Oral Cancer Foundation. Bells, Whistles, and I win. But those with Oral Cancer have won too as they have found a place to share with those with those who have "been there" about a cancer that can have devastating effects to people's ability to eat, speak and enjoy what they can of a much shortened life. I've often said that there are far too many Oral Cancer angels walking the streets of heaven, but it wouldn't be like that if Brian Hill, the founder and an oral cancer survivor himself, had it his way. He and the staff of the Oral Cancer Foundation work tirelessly to "get the word out" with dentists, general practitioners and the general public about this deadly cancer. While the information and support forums become lifelines for us cancer patients, the REAL work of the foundation is about trying to get to the stage where no one needs those Forums. The partnership with the Paltrow family has helped OCF, but it is a long way from the goal of having the profile that Oral Cancer deserves to save lives. For me, I was first diagnosed with oral cancer in 2004 and had about 1/2 of my tongue remove - left side. I went through 32 radiation treatments and eventually even returned to work. I didn't find the Oral Cancer Foundation until after my first surgery, but I sure wish I had. The experiences and advice from those who had walked this path before me would have been invaluable. I considered myself fortunate to have at least somewhwhat recovered and I was thankful to be able to, perhaps, help someone else. Then - in the spring of 2007 - the other shoe dropped and I went through months of tests to FINALLY diagnose a recurrance. Without the support of the OCF "Family" I wouldn't be here today. They helped me try to keep my fears in check while simultaneously encouraging me - strongly - to not give up the quest for a diagnosis. Biopsy after biopsy, they supported me. After a diagnosis was finally made in September of 2007 I went through another surgery. Without information from the forum, I doubt that I would have pressed for a SECOND round of radiation - despite the general perception that you can only have radiation once. This second radiation (with some chemo) saved my life. Ergo...the forum saved my life. What can one say about the excellence and dedication of others? Just plain amazing. Check in at about 2am almost any night and you will find the founder Brian Hill online answering posts. And yes, he still has his day job! This Foundation truly deserves all the accolades it can get. Donna Butcher (Pandora99 on OCF)

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The Great!

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

getting the word out to ANYONE who will listen about Oral Cancer, encouraging frequent screening and early detection. Early detection is key to surviving this life altering cancer.

Ways to make it better...

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

feel very frustrated at the number of new oral cancer patients, and the extremely young age of these new patients. The link to HPV and the oral cancer screening process need publicity to stop this disease is its tracks.

More feedback

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

my ability to, through the forms, made a difference in the lives of other cancer patients and caregivers.

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

DEDICATED!! Imagine receiving a personal thank you note from the founder for whatever donation you are able to make! Even more impressive is that you now know the note was probably written at 1 or 2 in the morning when the founder finished his day job!

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

educate and assist. It would educate and assist the general public, doctors and cancer specialists. It could indeed spread the word about all facets of the disease. It would be able to educate all about early detection - a life saver.

Ways to make it better...

I had found this site before my first surgery. I would have found those who had like experiences and been able to draw on their eternal hope and experiences.

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

the ability to "get the word out". It is difficult to get enough recognition and press coverage to make a serious impact on the general public. Oral Cancer does NOT have the demographic our gp's were taught! We need to educate the world to save lives.

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

I am thankful to have found the Foundation. Brian Hill, the founder and an oral cancer foundation, is my Hero. I am awed at the dedication and purpose with which the Oral Cancer Foundation volunteers and staff operate.

When was your last experience with this nonprofit?

2009

MY ROLE:
Client Served & I hope I have helped some other oral cancer patients, as I have been helped myself.