Thank you for your amazing support.

We look forward to continuing the pursuit of the CURE in 2013.

February is Cholangiocarcinoma Awareness Month

Posted by on Feb 1, 2013 in Uncategorized | 0 comments

February is cholangiocarcinoma awareness month, and The Cholangiocarcnoma Foundation will be leading numerous events in February to help raise awareness of this rare cancer. Events includefundraising for 2013 research grants, awareness drives on Facebook and Twitter, spotlight webinars on research efforts, and much more.

 “February gives our community a dedicated month-long opportunity to focus their energy to educate the general public about cholangiocarcinoma (bile duct cancer) and the challenges associated with diagnosis, living with this cancer and finding a cure,” said foundation president, Stacie Lindsey. She added, “Similar to last year’s effort, we’ll be offering engaging and informative activities based on our mission of Collaboration, Understanding, Research and Education to assist with directing our efforts.” To participate or learn more visit the foundation’s web site at: http://www.cholangiocarcinoma.org

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Foundation Awards $184,202 in Grants and Project Funding in 2012

Posted by on Jan 31, 2013 in Uncategorized | 0 comments

The Cholangiocarcinoma Foundation awarded $184,202 in Grants and Project Funding in 2012.   A $40,000 Grant was awarded to the UCSF Hepatobiliary Tissue Bank(CC#124512) which will support the advancing translational Science in Cancers of Biliary Tract through Biorepository of Human Tumor and Blood Specimens.  The goal of the HBTB is to advance our understanding of this rare and under-studied tumor type.  The immediate goal of the HBTB is to collect high quality frozen cholangiocarcinoma specimens along with paired normal tissue (blood or normal liver) to support the opening of a cholangiocarcinoma cohort with the National Cancer Institute’s the Cancer Genome Atlas (TCGA). Another $40,000 was awarded for Cell Lines and Novel Antibodies at Massachusetts General Hospital.  The support will test a novel immunotherapeutic strategy which targets not only differentiated cholangiocarcinoma cells, but all cholangiocarcinoma stem cells.  An additional $44,202 was given to the Mayo Clinic for Hepatobiliary Neoplasia Registry and Biorepository.  The overall goal is to support the collection of clinical information and samples of blood and tissue from patients with  hepatobiliary neoplasia in an IRB approved International Hepatobiliary Neoplasia Registry and Biorepository.  Finally, The American Society of Clinical Oncology was awarded $60,000 for its Young Investigator Award.  This grant is intended to raise awareness and trigger progress against cholangiocarcinoma, while providing critical early funding for physician-scientists at the beginning of their careers in the field.  Providing early career grants helps encourage investigators to focus their career on bile duct cancer.

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Oxford University-UK, interested in collaborating with The Cholangiocarcinoma Foundation

Posted by on Nov 30, 2012 in Uncategorized | 1 comment

Dr. Said Almamari from Oxford University in the UK is very interested in collaborating with the Cholangiocarcinoma Foundation. He is currently doing research on Primary Sclerosing Cholangitis (PSC) and Cholangiocarcinoma (CC). Upon the completion of his Study he will return to Yemen, where there are many cases being untreated.

 

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Patient Advocacy at the AASLD-The Liver Meeting

Posted by on Nov 30, 2012 in Uncategorized | 0 comments

Barbara DuPont, our very own Advocacy Volunteer represented The Cholangiocarcinoma Foundation at the American Association for the Study of Liver Diseases, AASLD – The Liver Meeting.  The meeting was held in Boston, November 10 – 12.  Saturday, Nov. 10th which was also the 5 year anniversary of the loss of Barbara’s love  Jacques to Cholangicarcinoma – being at this convention was just where she needed to be on this day.

This was the first time that The Cholangiocarcinoma Foundation was present at the AASLD, American Association for the Study of Liver Diseases . Their were approximately 10,000 attendees. The Liver Meeting is the premier annual US conference on hepatology, covering all aspects of liver disease including viral hepatitis, fatty liver, hepatocellular carcinoma, and liver transplantation. Barbara was able to speak with physicians, surgeons, fellows, researchers, scientists etc. from all over the world AND handed out over 250 brochures and ran out of bracelets (180) on the last day.

The booth was located on Foundation Row, which was an excellent place to be. It was set up in a large hallway that led into the main exhibit hall, everyone had to pass by us to go to the exhibit hall. There were 11 other foundations , including several international foundations. We were the only Patient Advocacy Foundation in attendance.

Numerous attendees from Greece, Egypt, Costa Rica, United Kingdom, Thailand, Cairo, and Toronto were very interested in knowing about the foundation, as they are seeing a rise in incidence in their country. One physician from Costa Rica said that she alone has 6 cases this year. She was alarmed because her patients are young and they have a small population. She also knows of physicians in other towns in Costa Rica who are also seeing patients. Many had heard about The Cholangiocarcinoma Foundation and many had not. Barbara was able to show many attendees the site with the use of her iPad.  Everyone was very impressed with the wealth of information it contained.  Many people expressed their thanks for the immense efforts of the foundation in raising awareness. It is through this awareness that research, the ability to detect at an early stage, and the improvement of the treatment and care of people living with this cancer will receive, as well as the hope for a cure.

This was a successful venue for the Foundation. Plans to attend next year will be strongly considered.  There was a true sense of increased attention and effort by the scientific and medical communty to further research and improve the options that are available to treat Cholangicarcinoma.

 

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Donna Strawn-Smith, Honors Her Son Todd Ramberg

Posted by on Oct 22, 2012 in Uncategorized | 1 comment

Donna Strawn-Smith makes a variety of beautiful blankets to raise money and create awareness for the Cholangiocarcinoma Foundation.

Donna sends weekly donations to the foundation in memory of her Son Todd Ramberg (39),  of Huntington Beach, CA. He is deeply missed by his family and friends. His memory remains alive through these beautiful hand-crafted blankets.

Donna, thank you for your kindness and generosity in support of the Cholangiocarcinoma Foundation.

Todd’s Story:  http://www.mem.com/Story/4462800/23701877/23701881?title=Biography

Please contact Donna to order a blanket: donnasmith1@sbcglobal.net

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Annual Board Meeting

Posted by on Oct 15, 2012 in Uncategorized | 0 comments

The Cholangiocarcinoma Foundation annual board meeting took place October 12, 2012. Plans for 2013 were approved as we continue to work toward the foundation’s mission of CURE – Collaboration, Understanding, Research and Education. During the meeting, the board voted in a new President, Stacie Lindsey. Stacie has been volunteering since the foundation’s inception and on the board for the past five years. Also added as the board’s Treasurer is Lawrence Goodfield. Lawrence is a Senior Manager with PricewaterhouseCoopers, LLP in Philadelphia. We look forward to his contribution. Find out more about the Foundation’s mission and board members at: http://www.cholangiocarcinoma.org/visionmissionvalues.htm and look for more details on the 2013 plans in the next few weeks.

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BIG News: Percy, one of our own advocates is accepted as a Patient Representative to the FDA Advisory Committee!!!

Posted by on Oct 8, 2012 in Uncategorized | 0 comments

We have BIG news……we have representation on the FDA Advisory Committee.

Our Percy has qualified and has been accepted to function as Patient Representatives to the FDA Advisory Committees.  Congratulations Percy and Congratulations Cholangiocarcinoma Foundation patients, families and friends.

The process of application and acceptance is lengthy, challenging and very time consuming.  Our Percy weathered the storm (so to say) and is now officially representing our patient community and that of other diseases.

A quick overview of the position:

The Patient Representative is responsible for providing the Food and Drug Administration (FDA) and the advisory committee the unique perspective of patients and family members directly affected by a serious or life-threatening disease. The Patient Representative should have:

•    Personal experience with and/or be knowledgeable about the specific illness or condition under discussion by the committee;
•    The ability to articulate the perspective of patients;
•    Experience as a patient advocate
•    Formal affiliation with a patient advocacy organization;
•    The ability to identify issues through communication with patient constituencies.

The Patient Representative’s role is to provide the advisory committee and FDA insight on issues, problems, and/or questions pertinent to the viewpoint of patients and family members living with a specific serious or life-threatening disease. S/he serves as either a voting or non-voting member of the advisory committee.

At the conclusion of each meeting, the Patient Representative will be encouraged to provide OSHI with a brief summary of his/her experience on the advisory committee and suggestions for enhancing patient representation, if any.

The Patient Representative must be well-informed about patient concerns and have the ability to understand and actively participate in advisory committee discussions. The Patient Representative serves on advisory committees when a product or therapy (drug, biologic or medical device) related to a serious or life-threatening disease is under review

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