Posts made in January, 2014

Barnes-Jewish Hospital Share a Survivor’s Story, A Liver Transplant Recipient

Posted by on Jan 31, 2014 in Uncategorized | 1 comment

Thank you Cathy and Dr. William C Chapman with the Barnes-Jewish Hospital for sharing a  Truly Inspirational video.  Please share this story within your social networks, family, friends, and communities.

Read More

Coming Soon… The CCF Patient Registry – Helping Others, We need your help!

Posted by on Jan 30, 2014 in Uncategorized | 2 comments

We are pleased to announce the upcoming launch of
The Cholangiocarcinoma Foundation (CCF) Patient Registry.
http://registry.cholangiocarcinoma.org

What is a Patient Registry?
A Patient Registry is a secure database of specific and relevant health information entered by participants.

“Creating a registry of patient is the single most valuable action a rare disease community can take. The registry provides critical knowledge which make that disease easier to study, increasing the probability a treatment can be developed.”
–David Meeker; President and CEO of Genzyme
Who can participate?
• a person who has been diagnosed with Cholangiocarcinoma (current patient or survivor)
• a family member (spouse, child, or sibling) who has permission to enter health information about a person who has been diagnosed with Cholangiocarcinoma (including patients who have passed away)

We need your help…
Join The CCF Patient Registry and help extend The Cholangiocarcinoma Foundation’s global reach by creating the only database of patient health information related solely to the diagnosis and treatment of cholangiocarcinoma.

The Mission of The CCF Registry is to assist, accelerate and support research into:
• earlier and more comprehensive diagnosis
• life-extending therapies and treatments
• new clinical and repurposed drug trials
• better symptom and side-effect management
• efforts that ultimately leading to a cure

The Vision of The CCF Registry Database is to collect patient information about the incidence and prevalence of cholangiocarcinoma and related disorders. The CCF Registry will also assist in the screening of appropriate participants for research studies and clinical trials.

What can I do now to prepare?
Gather your health records, test results and information about your family’s health history. Signup here to receive notices and updates about the CCF Patient Registry.

Please contact kim.crittenden@cholangiocarcinoma.org for more information

Read More

Want to Stay Informed?

Posted by on Jan 29, 2014 in Uncategorized | 0 comments

Want to stay informed regarding relevant information regarding Cholangiocarcinoma and the work of the Foundation?  It’s simple, use the link below and supply us with your information and we will keep you informed.

http://cholangiocarcinoma.org/keepmeinformed.htm

Read More

Generous Donation by AndreaRemembered.org

Posted by on Jan 28, 2014 in Uncategorized | 0 comments

Another successful fundraising event by AndreaRemembered.org.  The event raised $140,000 in memory Andrea Fuguay for both Cancer Research and Scholarship funding.  Andrea, much too young herself, left behind four young children.  However, her memory lives on through AndreaRemembered.org. The organization will donate $50,000 to the Cholangiocarcinoma Foundation and $90,000 to the Andrea M. Fuquay Memorial Scholarship Fund.  With this donation, the Scholarship fund now donated $250,000 to students who know the pain of losing a parent.  The majority of funds raised moving forward will be donated to The Cholangiocarcinoma Foundation.

Many thanks to AndreaRemembered.org from the Cholangiocarcinoma Foundation for this generous donation. Research and advocacy would not be alive without efforts like AndreaRemembered.org and similar groups!

Here is a link to  the video shown at AndreaRemembered.org’s Event from January 2014  http://vimeo.com/83803788

 

 

Read More

Exciting news….Our upcoming release of the Book 100 Questions & Answers about Biliary Cancer

Posted by on Jan 26, 2014 in Uncategorized | 0 comments

We are pleased to announce the upcoming release of the book 100 Questions & Answers about Biliary Cancer, written by Drs. Ghassan Abou-Alfa and Eileen M. O’Reilly.

http://book.cholangiocarcinoma.org 

The book will address Questions like:
What is bile and what are bile ducts?

How is cholangiocarcinoma diagnosed?
What determines whether my bile duct cancer can be removed by surgery?
How will I know that my treatment is working?

No one with biliary cancer needs to fight this disease alone. 100 Questions & Answers About Biliary Cancer guides patients and their families through diagnosis, treatment, and survivorship. Providing both the doctor’s and patient’s points of view, this book is a complete guide to understanding treatment options, post-treatment quality of life, sources of support, and much more. Through 100 Questions & Answers About Biliary Cancer, expert authors use their experiences with patients to provide support and hope to those afflicted by biliary cancer.

“Dr. Abou-Alfa is a board certified medical oncologist who specializes in the treatment of primary liver cancer, pancreas, gallbladder, and bile duct tumors. His primary focus is on improving the effectiveness of chemo-resistant chemotherapies with small novel biological molecules. This book will help patients and their families navigate through the difficult diagnosis of biliary cancer.”
– Marion Schwartz; Director of Advocacy
The Cholangiocarcinoma Foundation

What is the cost for the book?
The book is free… The Cholangiocarcinoma Foundation will provide printed copies to resources libraries, cancer centers and doctor’s offices.

Patients and caregivers will be able to download a free electronic version to a PC/Mac/eReader device.

For a small donation, the book can be personalized to honor and support your loved one impacted by Biliary Cancer and donated to their local “treatment center” or doctor’s office to increase awareness and support.
Stay tuned for additional details.

Please fill out the “keep me informed” to be notified when the book is available for distribution. Announcements and updates will also be posted on our Facebook Page.
http://cholangiocarcinoma.org/keepmeinformed.htm

Copies of the book will be ready for distribution this coming week, in time for February 2014
Cholanigocarcinoma Awareness Month

Questions? Please contact our Executive Director, kim.crittenden@cholangiocarcinoma.org for more information

Creating Awareness, Upcoming Book Release 

Read More