Posts by Meg Hood

Pack 225 Relay for Life in Honor of Christopher Wilke – May 3rd 2014

Posted by on Apr 21, 2014 in Uncategorized | 0 comments

Follow Pack 225 on Facebook & Join them on May 3rd 2014 in Burbank, CA

Burbank, CA – Pack 225 team up to Dedicate Relay for Life in honor of Christopher Wilke, the courageous struggle of the Wilke family and all those families in our Pack who have battled with cancer.  Follow Team Christopher on Facebook. Pack 225 need your help and support to reach their goals.

https://www.facebook.com/Pack.225.Relay.for.Life.team

Join our team

http://main.acsevents.org/goto/CubScouts

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100 Questions & Answers About Biliary Cancer eBook Ready for Download

Posted by on Feb 2, 2014 in Uncategorized | 0 comments

Book is Now Available: http://www.cholangiocarcinoma.org/book.htm

You can order  and download your free eBook by completing an online form:  http://cholangiocarcinoma.org/bookorder-ebook.htm

 

 

 

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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.

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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

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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 

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