1 person found this review helpful
CARCINOID CANCER AWARENESS NETWORK INC
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April 27, 2013
1 person found this review helpful
After diagnosis, on the operating table, with a lung carcinoid tumor I was told it was not really cancer, it was out and go and enjoy my life. While in substantial post- operative pain for many months, I had to ask to see an oncologist and pour over the Internet to find out information and help. CCAN was a wonderful source of information and led to other ways to contact the carcinoid community, providing much needed advice ( it is cancer!) and how I should be followed from now on. Recently, I was lucky to be able to attend the world's first patient lung carcinoid conference at Vanderbilt University TN and hear talks from one of the very few Us experts and the world expert on this disease. it also made all the difference to be in a room of people who 'get it' , when faced with a rare disease. This event would not have been possible without the hard work, organization and support of the wonderful people at CCAN. They are doing a fantastic job, Thank You!
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2013
2 people found this review helpful
April 26, 2013
2 people found this review helpful
Being diagnosed with carcinoid cancer is unlike facing other cancers....there are no familiar ribbons, rallies or races for support and connection. Most doctors misunderstand carcinoid and even the cancer.gov and American Cancer Society websites give dangerously inaccurate information!
Thank God for CCAN! Despite being a small organization, they continue to achieve incredible results with things like their free hotline where you can talk directly with an experienced patient/caretaker team, wonderful information packets mailed upon request, helping nationwide carcinoid support groups, and doing so many other things nobody else does for carcinoid cancer patients!
I'm a lung carcinoid cancer (aka "lungnoid") survivor who started a facebook support group and wanted to work with my wonderful carcinoid oncologist (Dr. Eric Liu) to hold the first-ever lungnoid conference. Lung carcinoid is even more rare and there is VERY little support for us. No profit to be made from us. But CCAN stepped in, and not only funded and produced an AMAZING, history-making Lungnoid Conference at Vanderbilt University in Nashville (April 2013), they paid for the only lungnoid expert in the world, Dr. Dan Granberg, to come in all the way from Sweden!
CCAN made it possible for Dr. Granberg to see patients in Nashville for an entire week, then help more than 100 attendees at the Lungnoid Conference with his presentation and interactive Q & A session. For twenty dollars, attendees received not only a full-day conference devoted just to lung carcinoid and the opportunity to learn from and interact with a team of caring experts, but a lovely breakfast AND lunch, beautiful advocacy messenger bag filled with information and awareness goodies, a spiral-bound notebook with all the Powerpoint slides from every presentation at the conference, and most importantly, a chance to connect with others facing this unique and lonely cancer.
CCAN does not have a corporate staff making large salaries. This is a FAMILY doing all these amazing things. A family with a mom who got carcinoid cancer and decided that nobody else would face the struggles alone like she had. That mom is Maryann Wahmann and she has singlehandedly changed the face of carcinoid cancer with her amazing determination, energetic personality, and compassionate spirit.
Making a donation to CCAN isn't going to line the pocket of a salaried employee, it's going to pay for printing costs and stamps for packets to be shipped out weekly to newly diagnosed patients, for conferences to educate patients as well as medical communities, for advocacy and awareness (did you know CCAN is responsible for the zebra-stripe cancer ribbon for carcinoid?) - for things that really matter and truly make a diference for every carcinoid cancer patient and anyone who cares about them.
Thank you, CCAN, for being the family and face of carcinoid awareness, for helping to educate the world that carcinoid IS cancer, and that nobody facing it is ever alone! xoxo :)
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2013
2 people found this review helpful
April 26, 2013
2 people found this review helpful
I am forever grateful for the many services of CCAN! After being diagnosed with Carcinoid CA in January, I began researching online to learn as much as possible about my cancer that most people have never heard of. The greatest "hit" that I made while "Googling" was CCAN. I did a request for information and in a few days received an amazing package full of information, DVDs and most importantly a DVD of a presentation by Eric Liu, MD of Vanderbilt-Ingram Medical Center. I do have a local oncologist who is currently treating me and he is very excited to learn about Dr. Liu.
There was also a schedule of many CCAN events and I went to the recent conference in NYC which CCAN organized. I learned so much but was particularly impressed with Dr. Eric Liu, Maryann and Robert Wahmann.
Maryann Wahmann and her organization are responsible for me attending this life-changing event. I am now a patient of Dr. Liu and will be traveling to Nashville for treatment and surgery by him.
This is an exceptional organization and people can contribute to it knowing that their contribution will be used wisely to help Carcinoid Cancer patients.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2013
2 people found this review helpful
April 24, 2013
2 people found this review helpful
As a 3 year NET patient, I was not aware that I should have been followed more by my doctors. Through CCAN's awarness network and the programs they provide, I learned that I should have been more closely followed by my oncologist.
I am now in the process of getting the medical follow through that I should have been receiving for the past 3 years. This is truly a life changing event for me and it wouldn't have been possible without CCAN and the wonderful work they do and provide. They made me realize that I am in charge of my medical care1
Thank you so much for all you do!
Ronda Bogani Ayala, RN
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How would you describe the help you got from this organization?
Life-changing
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Definitely
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Very Well
When was your last experience with this nonprofit?
2013
2 people found this review helpful
April 24, 2013
2 people found this review helpful
When I was first diagnosed with carcinoid cancer, my oncologist told me there was nothing to be done but an injection once a month, then maybe clinical trials when that quit helping. I was reluctant to search the internet and pick up false hope chasing windmills and fake cures. But, I finally decided I had to turn to the internet, because I was getting no information about the disease from my doctor. I found CCAN, requested their information packet, watched videos from the conferences they put together. I was amazed at just how much more could be done to help me than what I had been told. And I have sought out that help. I am so very grateful to CCAN for all they do.
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How would you describe the help you got from this organization?
Life-changing
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Definitely
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Very Well
When was your last experience with this nonprofit?
2013
October 18, 2012
1 person found this review helpful
THE CARCINOID CANCER AWARENESS NETWORK helps change lives of those living with carcinoid cancer. They help to educate, motivate, and emotionally support patients and their families. My experience with the carcinoid awareness network has been nothing but positive. They have help me to find doctors better understand my diagnosis. They've also help me to communicate with other people but the same diagnosis and find support.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
June 22, 2011
2 people found this review helpful
When I was told I had carcinoid go on the internet and look it up, I found all kinds of information ,some trying to sell me things. I was scared and upset. Carcinoid as I was told was rare and no one knew very much about it. All I could think was what now? I went back to the internet and found Carcinoid Cancer Awareness Network with a phone number. I called and was sent all kinds of up to date information. This information has been lifesaving. CCAN has and is always there for me to this day as I head into 4 years past diagnois. I don't know how I would manage without them.
The Great!
I've personally experienced the results of this organization in...
When ever I have a question all I have to do is call. I am sent information on events where I have learned new studies and the results and how to monitor carcinoid.
Ways to make it better...
If I had to make changes to this organization, I would...
I really do not know of any changes I would make. They have been wounderful.
2 people found this review helpful
October 16, 2012
2 people found this review helpful
I walk every year for this cause as a dear friend of mine suffers from this disease and CCAN has helped so many people. You hear it constantly from everyone at all the fund raisers on how CCAN helped them through a crisis and their kindness is never ending. It needs help in getting the word out to more people as this is a rare cancer that most people don't even know about yet.
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Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
2 people found this review helpful
October 4, 2012
2 people found this review helpful
When I was diagnosed with a rare cancer, there was very little information found on the Internet . Thanks to CCAN I found referrals to doctors the knew the diese as well as good information on treatment. They are always available to help with any questions. They also help organize a conference for patience to learn more about this horrible cancer.
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Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
2 people found this review helpful
October 1, 2012
2 people found this review helpful
This cancer is such a rare kind that it is hard to find up tp date information on new research. CCAN helps to provide such information. It also provides contacts with others who have the same cancer. The national conference sponsored by CCAN was very informative and worthwhile attending.
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
2 people found this review helpful
October 1, 2012
2 people found this review helpful
After many years of not having anywhere to turn, or real information on carcinoid cancer/nets. I found the CCAN and i got all the real information about my cancer, that not only myself but my drs could refer to. LIFE SAVERS... sums it up
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
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