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Saturday, December 31, 2011

Wishing all of us a fully-lived 2012

I hope that 2011 was a full year for you and your loved ones. And I really really wish for us all to be around to see December 31, 2012 together. Unfortunately, I know of too many that did not get to see this day due to their cancer's progression, and I figure it will be the same next New Year's Eve. If my blog is of any good in this world, I will continue to record items in the news about Adenoid Cystic Carcinoma in the hope that sharing our stories will further interest and financial support to study and cure this rare cancer. Plus, as a Cheeky Librarian, I want our own stories archived for others to see and appreciate the strength and honor told through the words. To you, ACC-wearers, as a fellow wearer of this cancer I salute you and all of your efforts, no matter how big or how small they are. To you, friend or family member of someone that wears ACC - I salute you for your steadfast support of the one in your life that is walking this path, as you are more important than science in the fight against cancer. And to all that cheer this Cheeky Librarian on daily through emails, in-person conversations, or even just smiling at me in the hallway: THANK YOU! Happy New Year, everyone.

Adenoid Cystic Carcinoma in the news

I saw this news story at Crossing the Atlantic Ocean for a life saving cure.
It appears to be an entry for Christopher L. Lyles to the's America Inspired contest. From the article: "Chris was diagnosed with Adenoid Cystic Carcinoma (ACC) after his 30th birthday and became the first person to get a trachea [sic] transplant using his own cells.He has used his cancer to bring awareness to cancer patients who need life saving treatment; but, his health insurance will not cover it."

Mr. Lyles is truly breaking new ground with his tracheal implant - here are additional links to news surrounding the procedure:

Local man travels to Europe for life-saving operation

Nanofiber Solutions plays key role in world's first synthetic tracheal implant made from Nanofibers

Harvard Bioscience's "InBreath" Bioreactor Used in World's Second Successful Synthetic Trachea Transplant

Artificial trachea created by Nanofiber Solutions helps cancer patient

I wish Mr. Lyles all the best and thousands of days ahead with his daughter. It sounds like he will be the pioneer that others of us with ACC look on in the future with grateful appreciation for his bravery in being the first.

More information about the America Inspired contest:

Friday, December 30, 2011

Adenoid Cystic Carcinoma in the news

Sad news from Whitehall, PA. Julie Duttine died on December 7th. She was a young mom fighting ACC while supporting her son Jaden through his cancer treatment (I posted about them last January). The family asks for memorial donations to the Children's Hospital of Pittsburgh or to St. Gabriel's School. My deepest sympathy goes to her family during this very sad time. Julie's strength was and still is an inspiration to me.

Monday, December 19, 2011

Congratulations, Jeffrey Kaufman of the Adenoid Cystic Carcinoma Research Foundation!!

I just saw an announcement from the National Institutes of Health that Mr. Kaufman, of the ACCRF, is one of 7 named to the NIH Council of Councils:

From the announcement:
"The National Institutes of Health today announced the appointments of seven individuals to the NIH Council of Councils. The council was established to advise the NIH Director on policies and activities of the Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI), including making recommendations on research that represents important areas of emerging scientific opportunities, rising public health challenges, or knowledge gaps that deserve special emphasis or would otherwise benefit from strategic planning and coordination.
The council is composed of 27 members nominated by the NIH Institutes and Centers (IC) and from the Council of Public Representatives, an advisory committee to the NIH Office of the Director. Council members bring knowledge of their individual IC’s missions and operations, not as official representatives, but to provide advice beyond the research agenda of any individual IC.
"The breadth of expertise brought by these individuals will enhance the council's ability to achieve its mission by offering a diversity of perspectives and talents. Collectively the council will inform our approach to selected trans-NIH research initiatives." said DPCPSI Director, James M. Anderson, M.D., Ph.D."

I know Mr. Kaufman will be in the right place to bring our rare cancer into some very important conversations and planning sessions, and I thank him for his service!

In addition to having this "six degrees" connection to the NIH Council of Councils - I know another name in the seven: Joyce A. Mitchell, Ph.D. I was fortunate to work with her team at the University of Missouri-Columbia, and know her to be a major 'mover and shaker' in the health care world. Go Dr. Mitchell, go!

Thursday, December 01, 2011

Big day for me and dear husband

Today is our anniversary. 27 years ago, we stood in front of a few family and friends and pledged that we would be there for the other one, in good times and bad. Boy howdy - have we ever! Sending happy day wishes to that man that has stood by me and that I have stood by him through the years. They have all been good, hon.

Here's wishing that everyone reading this has someone special in their life, including and especially themselves.
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