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Saturday, May 26, 2007

Adenoid Cystic Carcinoma in the news

Every month, I hit Google News and search for adenoid cystic carcinoma to see if anyone is writing about it. Here are the stories I found today:

in the Wall Street Journal: Coaxing Cancer Researchers to Take Your Money (about the Kaufman Foundation):

in Kingston This Week (Ontario, CA): Broadcaster to join legions of survivors at Relay

in Charleston Daily Mail (West Virginia): Woman claims malpractice left her without an eye and part of her nose

KMBC-TV (Kansas City, MO) - Cancer Patient Upset with Coventry Insurance

July 9, 2007: Update on the Kansas City story

July 18, 2007: Update on the Kansas City story

July 19, 2007: Update on the Kansas City story

August 6, 2007: Update on the Kansas City story


Mary said...

While the majority of the Wall Street Journal article was written by a friend of the Kaufmans, there is also a paragraph abou the Adenoid Cystic Carcinoma Organization International ("ACCOI") where the Kaufmans first found us. Here is our website:

For anyone who has adenoid cystic carcinoma, I would urge you to visit the website and join our free email Information Group where others share information on this rare cancer in an atmosphere of kindness and support.

Mary said...

Wanted to warn you that the link for "Rare Cancer Alliance" has a donation button and donations to the Rare Cancer Alliance is NOT a nonprofit. The donations go directly to an individual names Sharon Lane's personal bank account.

It says "PayPal is the authorized payment processor for Sharon Lane. To continue, please enter the required information below. Learn more about PayPal."

This is the link:

Since it is not a nonprofit, and an individual is making money off of it for her own uses, you might want to remove that link.

Teresa Hartman said...

Thank you for the link to ACCOI, Mary. I will check to make sure I have that link in the sidebar (and if I do, it is time to post the links in the sidebar again for those that can't see the sidebar). ACCOI helped me when I was first returning to work, and I continue to be on their distribution list. As for the Rare Cancer Alliance, Ms. Lane is the one that maintains that wonderful site, and deserves to have some money donated her way. Like a lot of sites that are maintained by cancer survivors, this one is held together by someone who has big bills just like the rest of us, and if someone wants to donate, she has made it possible - it is not a requirement to use the site. I have given to other sites for similar reasons, and don't require that they be non-profit for me to share any extra pin money with them. Thank you for the clarification, and I will continue to refer folks to the site for good sources of information regarding rare cancers of all types. If the world was right, anyone who began serving fellow patients would get another helper to go through the 501(C)3 process to start up a non-profit correctly while they are also going through the insurance and treatment process for their cancer.

Who links to my website?