2 people found this review helpful
CARCINOID CANCER AWARENESS NETWORK INC
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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
1 person found this review helpful
June 1, 2011
1 person found this review helpful
I know one of the founders of this organization from high school. Much to my surprise the husband of a colleague at work has this specific (and rare) cancer. There are no coincidences. That CCAN came into my life so that I could pass on the information to my colleague has meant so much
CCAN , was able to give this family the information they needed to make difficult decisions about their future.
I have participated in the Walk and the Gala this past year. Bob and Maryann are so warm, knowledgeable and supportive. The outreach they do with the public, corporations and hospitals is invaluable.
The Great!
I've personally experienced the results of this organization in...
In passing on information to a colleague whose husband has this cancer.
Ways to make it better...
If I had to make changes to this organization, I would...
Fund them with more money so they could do more outreach and expand.
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