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July 22, 2009

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July 22, 2009

I was originally diagnosed with tongue cancer at age 24 in 2001. Back then, an internet search on oral cancer yielded nothing but a few clinical case studies and some gruesome pictures. It was a truly a lonely world for 24 y/o guy with an "old mans" disease. I quielty completed my treatments and returned for check-ups for 6 cancer-free years. Fast forward to 2007, I am devastated with news that my cancer is back with a vengeance, except now an internet search delivers me to the Oral Cancer Foundation. The collection of knowledge stored on this database, combined with the personal touch of a fellow survivor just giving the "you can do it" makes this website priceless. I don't know what else to say except that while this website cannot replace a team of doctors, it can absolutely make life more bearable at a time where it is very hard to see any light at the end of the tunnel.

The Great!

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

its timely, 24/7 assistance for those in need who are battling the Oral Cancer.

Ways to make it better...

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

I can't think of anything

More feedback...

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

This is a support group/enyclopedia of Oral Cancer/latest cancer news channel. All in one place where I feel 110% confident that only my best interests are in mind.

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

Amazing, strong, brilliant, selfless people

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

Support research and could provide more assistance to this small but desperate population of oral cancer sufferers

Ways to make it better...

I had found the site sooner

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

awareness and funding

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

I'd like to become more involved

When was your last experience with this nonprofit?

2009

July 21, 2009

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July 21, 2009

Absolutely needed. This is the place to go if you need information about oral cancer and ALL that is associated with it. The board is moderated which keeps the crazies at bay. Hats off to Brian for crating and nurturing this!

More feedback...

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

incredibly helpful

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.

Photos

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 21, 2009

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July 21, 2009

This Foundation was a lifesaver for our family. Oral cancer seemed to be relatively unknown and we were having a hard time getting information we needed from the medical community. The work done by Brian Hill on this site is invaluable to anyone stricken by this disease.

The Great!

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

The care I was able to give my husband during his fight with Oral cancer.

Ways to make it better...

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

Change nothing

More feedback...

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

The ease of access to the information I needed and the caring and kindness of Brian Hill.

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

always willing to give a frightened caregiver the understanding and advice needed.

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

Help Dental professionals becaome more aware of the responsibility they have to do an in-depth examination for Oral Cancer. Give as much comfort and care to the patients and families as other cancer organizations appear to have access to.

Ways to make it better...

I had found the site earlier in the treatment process.

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

Lack of funds

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

The man we have to thank is Brian Hill. I cannot imagine having to go through the fight we had without the help and advice we received from The Oral Cancer Foundation. I truly believe my husband owes his life to OCF.

When was your last experience with this nonprofit?

2009

July 20, 2009

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July 20, 2009

I have been involved with the Oral Cancer Foundation since 2003 when I was diagnosed with tongue cancer at the age of 41. I met some unbelievablely generous people who unfortunately did not survive their battles with this horrible disease, but they gave unselfishly to others while they were suffering themselves. I will never forget them or any of the other amazing friends I have made through OCF. It is unquestionablely the best source for information and support for people dealing with head and neck cancer.

The Great!

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

oral cancer screening events that raise public awareness.

Ways to make it better...

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

not change a thing.

More feedback...

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

the opportunity to meet unbelievably generous people willing to offer support and comfort to complete strangers.

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

extraordinary.

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

change the five year survival rate of oral cancer by making a real difference in early detection through educating dental and medical professionals and increasing public awareness.

Ways to make it better...

no suggestions.

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

the continuing job of fund raising.

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

Brian Hill has never given up when most people would have. He is a survivor in more ways than one and has given more than anyone should ask or expect.

When was your last experience with this nonprofit?

2009

July 20, 2009

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July 20, 2009

When my husband was diagnosed with stage IV cancer of the largnx, I was lost. I then found the Oral Cancer Web site. It was a god send for me. I found reliable information on the disease, tips on treatment issues and a feeling that we were not alone. The Survivor/Patient forum gave me the tools to deal with being a caregiver. It made my life so much easier, as I knew what to expect from actual survivors and caregivers. Brian Hill has worked unselfishly to promote the awareness of oral cancer and give the world the wonderful tool of the web site. I hope everyone can be made aware of this organization so oral cancer can be diagnosed earlier and more lives can be saved.

The Great!

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

The information they've made available to those diagnosed with oral cancer.

Ways to make it better...

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

I can think of nothing I would change.

More feedback...

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

Being able to share and get first hand information on issues with oral cancer.

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

Wonderful, dedicated and caring people. Brian Hill can't be matched as a driving force behind the organization.

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

Fund research for oral cancer and do more advertising to raise awareness of oral cancer.

Ways to make it better...

I would have know about them when my husband was first diagnosed

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

Funding and getting the message out about oral cancer.

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

The members of the Oral Cancer Foundation are like family.

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 OCF has been instrumental in helping my sister-in-law Suzanne Gallo in her fight against oral cancer! I donated money and participated in a walk in May 2009 w/ Suzanne and other family members to support efforts at finding a cure for this disease!

Photos

The Great!

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

the support they show my sister-in-law

More feedback...

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

the walk in may 2009

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

very nice and inspiring

When was your last experience with this nonprofit?

2009

July 20, 2009

more

July 20, 2009

I discovered the Oral Cancer Foundation after I had completed treatment for Stage IV Head & Neck cancer. The ability to get answers to my "is this normal" questions, and to subsequently be able to help others through the Patient /Caregiver forums have been invaluable to me in aiding my recovery, both physically and mentally. The information available through the Foundation's website is unparalleled. Brian Hill's dedication to this cause makes him a true hero in my view. His untiring efforts to educate the public and professionals on the important of screening for early detection are most mpressive. I only wish I could contribute more financially to hte foundation.

The Great!

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

the assistance they have given to thousands of cancer patients and thier caregivers.

Ways to make it better...

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

try to find more people like Brian Hill.

More feedback...

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

the ability to pay it forward through the forums.

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

Dedicated, caring.

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

offer screenings in underserved areas, bring the message to even more of the public, and fund additional research.

Ways to make it better...

I had found this organization sooner.

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

fundraising in a difficult economy.

When was your last experience with this nonprofit?

2009

July 20, 2009

more

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.

Photos

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

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