Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
287 Reviews
1234.982585
| 1 ... 10 11 12...14 |
Write A Review
July 28, 2009

more

July 28, 2009

Hard to put into words what The Oral Cancer Foundation has meant to my husband - and me. My very strong, very active husband was thrown a curveball when diagnosed with Stage 4 tonsil cancer in June of 2004. The journey he took was decidedly ugly, but because I found invaluable information - and caring friends - on The Oral Cancer Foundation website, I was able to help him through chemo, radiation, a PEG, blood clots, surgery, misery, depression and sadness. Members of the group became true friends; as concerned about Tom's welfare as I was. Participating in a fundraising Walk allowed us to meet these on-line friends who remain in our prayers. Happily, my Tom is just a few months away from the Magic 5 Year mark. He may never regain his weight, and he will never regain the muscles in his neck and shoulders, but he never lost his faith in God - and he found new faith in his fellow man through the care and support he found with the Oral Cancer Foundation. Thank you

The Great!

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

the personal, caring way they ministered to my needs as caretaker for a very sick man.

Ways to make it better...

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

continue doing what I am doing

More feedback...

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

meeting people who were going through or who had survived the same devastating cancer that my husband was battling. Oral cancers are horrific and survivors live with the visible scars for the rest of their lives. Too many no nothing about these cancers.

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

make more aware of the horrible cancers that can come from tobacco use AND that even non-tobacco users can be struck by this disfiguring/deadly disease;make more aware that EVERY visit to a dentist should include a cancer screening;let more SEE the effect

Ways to make it better...

I cannot find anyway to make it better

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

getting "word out!"

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

the world is blessed to have those who will take their misfortunes and turn them into positive influences/experiences for others.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

My husband was diagnosed with larynx cancer in July 2005 and I started looking for support groups right away in order to find out as much as I could from those going through the same thing. Throughout his treatment and for 2-3 yrs thereafter, both he and I found links to the latest information on oral cancer protocols and news as well as morale support by reading the forums. The information we found on the website was invaluable. Fortunately, so far, all is well with us and so we lurk more infrequently. However we are now donating to the Oral Cancer Foundation annually and feel that it provides an invaluable service to cancer patients and their families.

The Great!

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

reading the forums and seeing the support that patients and families have received from fellow patients and from the value information found on the site.

Ways to make it better...

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

More feedback...

Ways to make it better...

While treatment of larynx cancer is similar to oral cancers, it is usually classified differently - so there weren't many people going through exactly the same thing on the forums. Reaching out to larynx cancer patients would expand the 'base'.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I stumbled upon the OCF website in Autumn '06 after being diagnosed with a stage 4 oral cancer with an unknown primary. Needless to say, that was an overwhelming time in my life and the information and support I found at OCF empowered me. I've never met anyone who's had an oral cancer and to be connected with so many who had this diagnosis satisfied a need in me to be understood. I learned a lot, I had a clear vision of what I was in for and I felt as if I'd found a haven of support. Thank you OCF. (For the record, I"m 2.5 years post treatment and have reclaimed my life. I'm better and stronger than ever). Mary

The Great!

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

how many people post and share on a daily basis. Some of the postings are excruciating to read, but OCF is loyal to its mission statement and provides information, support and an outlet for expression by those affected by oral cancer.

Ways to make it better...

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

send more frequent emails to those who explore the site. Sometimes, it's easier on us OC patients if someone else reaches out.

More feedback...

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

it provided a measure of peace of mind, even when my survival was uncertain. Do you know how valuable that is???? It's of immeasurable value.

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

intelligent, experienced and compassionate. Endlessly.

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

I don't have the experience of spending $10 million and so it's difficult to answer. My best guess would be that it should continue to do what it does so well already - which is to provide information, encouragement and support for oral cancer patients.

Ways to make it better...

I communicated with OCF. I read the postings and available information so very often but I could never bring myself to open up and post my own experience. In hindsite, I'd have done that.

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

likely seen on the tech end of maintaining a website. It seems to be a massive effort to keep the site organized and user friendly.

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

for a long time, I had no vision that I would ever have any quality of life again. Between my own determination to cling to hope, the extraordinary care of my oncology team, the endless love of my beautiful family and friends, and OCF,I'm back. :-)

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

The Oral Cancer Foundation was, and continues to be, extremely helpful to me in my fight against oral cancer. The information and support was absolutely invaluable.

The Great!

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

My survival. With the information and support of the group, I made treatment choices that were successful.

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 incredible amount of information that is easily available.

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

Very helpful

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

Act as a clearing house of real and needed information for physicians and patients.

Ways to make it better...

I have no suggestions. They do a great job.

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

Funding and staffing the website operations, letting physicians know they are there and the massive amount of information that they have available.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I found OCF in June of 2005, right after being diagnosed with base of tongue cancer, desparate and in need of help. With all the support given me by the other members of the site I was able to face what seemed at the time as an insurmountable task. The wealth of knowledge available on site coupled with the knowledge and never ending support from my fellow members has kept me fighting to this day. I will be eternally grateful for what the site has given me.

The Great!

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

my own personal life. I am still alive and can always find answers to my questions regarding what to expect next in my battle.

More feedback...

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

Many professionals, but far more just plain human beings, just like myself, battling an incidious disease. Real down to earth people with answers, caring and never too busy to help when they can.

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

expand and in doing so bring in many many more in need of caring and help to fight their cancer. Even more, it could make more people aware of this ever increasing form of cancer, and that one can survive it.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I am a 2x oral cancer survivor. Don't know how i would have made it through my radiation treatment without the help and insights of the OCF Forum. I was better prepared every step of the way thanks to the advice and encouragement i received from the many survivors and caretakers on the forum. I even kept a diary of my own treatment experience to help others in the future. Brian Hill has done an amazing job with this organization.

The Great!

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

action as a patient and the knowledge i gained was invaluable

Ways to make it better...

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

hope to raise even more money to raise awareness

More feedback...

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

connecting with others who have gone through what i have

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

amazing

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

raise awareness and early detection capabilities

Ways to make it better...

couldn't have been better

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

money money money

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

this disease sucks

When was your last experience with this nonprofit?

2009

July 27, 2009

more

July 27, 2009

I found this site during my radiation and chemotherapy treatment for cancer on the back of my tongue that had metastasized to my lymph nodes. I was a lurker for awhile but I saw too many people getting their answers from cancer survivors who had a cancer similar to mine. Finding survivors who have gone through almost an identical cancer is a great relief. No matter what you are told by doctors, finding a survivor with a similar cancer is emotionally priceless. It gives you a new level of hope. I joined in January of 2009 and posted my first question at 8 in the morning. Within 24 hours I had 10 replies. Two of which were from survivors with almost identical cancers. I found some the most valuable support throughout my treatment from this site and still view and sometimes post to it six months after my treatment ended.

More feedback...

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

More easily spread the word. I've found no other resources like this one for oral cancer.

When was your last experience with this nonprofit?

2009

July 27, 2009

more

July 27, 2009

Excellent source of accurate information on oral cancer. Forum provides personal experience of others diagnosed and treated for oral cancer. Emotional support for patient and caregivers second to none. I found the site when my husband was diagnosed and going through treatment 2 years ago and continue to visit the site daily to offer what support I can to others, knowing how much it helped my husband and myself on our journey.

The Great!

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

People that have completed treatment offering support and advice and daily issues affecting newly diagnosed and in treatment

Ways to make it better...

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

Find some high profile people that could draw attention to the disease.

More feedback...

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

The wonderfully supportive folks on the forums.

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

Kind,compassionate and giving plus very knowledgable.

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

Raise awareness and money for research.

Ways to make it better...

I had found the site at the time of diagnosis.

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

Raising the profile of oral cancer so that more money is dedicated to research and also increased awareness of the prevelance of this type of cancer so that more routine screening is done.

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

Thanks all that work tirelesslty for the cause, especially Brian Hill.

When was your last experience with this nonprofit?

2009

July 27, 2009

more

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

more

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.

More feedback...

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

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers