This organization has been a great source of support throughout my journey. I am especially comforted by how accessible the people of the foundation are to discuss issues (such as fundraising ideas and resources available). All the people involved seem to be totally invested due to personal experience with the terrible and rare cancer. My son in law and I have bonded through running and fundraising to honor my daughter whom we lost on 11-17-2013.
This site has been my sole source of information about Cholangiocarcinoma. It is run by an extraordinary core group of Moderaters, they are resourceful, compassionate and positively encouraging to everyone. With such a rare cancer, the personal stories and ability to actually interact with others who are fighting this disease, is invaluable!
A cancer diagnosis is heartbreaking but especially so with a rare and aggressive cancer such as Cholangiocarcinoma. It is frightening to navigate the medical system when so few practitioners have direct experience with this cancer at the same time treatment decisions must be taken quickly. The Cholangiocarcinoma Foundation plays a critical and at times life-saving role. The medical experts I have dealt with know of the Cholangiocarcinoma Foundation and have referred me to its wonderful on-line resources. I have contacted the Foundation outreach staff for advice and responses have been timely and sympathetic. The Foundation supports urgently needed research and through its moderated discussion boards allows patients and caregivers to educate each other about their experiences with diagnosis and treatments and to see there are many positive stories and reasons for hope. I cannot think of higher praise for this organization.
This foundation was basically my sole source of information when my mother was diagnosed with cholangiocarcinoma in June 2015. There's really nothing else out there. That's why I decided to raise money for them for the Bank of America Chicago Marathon this year. I know that my donations count with CCF. Without this nonprofit, I would have had virtually no information to go off of when I was researching this disease.
Very important nonprofit doing extraordinary work on an often overlooked cancer.
Like many I had never heard of Cholangiocarcinoma until my dad was diagnosed with it in 2008. So much to learn in such a quick time period I turned to the help and support of the people of the Cholangiocarcinoma Foundation and have been a volunteer with them ever since. All I can say if you or a loved one is touched by this horrible disease then please go there as you will find a wealth of information and get the help and support of some of the best and friendliest people out there.
I am extremely proud to be a small part of this organisation and I know that I will be a part of it for life. Please, do not go through this alone. Go over the to the CCF and you will be around people how know how you feel, what you are going through and will be there for you. It does not matter if you are a patient, family member, carer or a friend of someone with CC, do not go through this alone. Stronger together.
I had never heard of cholangiocarcinoma until the day my husband was diagnosed in May 2006. My desperate search for information led me to the Cholangiocarcinoma Foundation website. This was in the very early stages of the CCF. I immediately made some incredible connections and felt some comfort having conversations with others who understood what I was going through. My husband lost his battle in 2007, but I have become an active volunteer for this incredible foundation. I do as much as I can to raise awareness and I know that my time and effort is put to great use. For 5 years I have held an annual fundraiser, knowing that the monies raised are used to fund the much needed research that WILL one day find a CURE for this horrific cancer. This is an amazing foundation with so many incredible people. I am very proud to be a part of it.
When my mom was diagnosed with cholangioncarcinoma, the foundation was the only website that specialized with information specifically for her condition. They provided excellent and invaluable information for our family, especially the 100 questions booklet.
The Cholangiocarcinoma Foundation provided information and resources for my family during one of the worst times in our lives. My father, my best buddy, was diagnosed with stage 4 Cholangiocarcinoma in January of 2016 and passed away within months, in May of 2016. With this devastating news came a very poor prognosis but we knew we would fight. The research began and we came across The Cholangiocarcinoma Foundation, which led us to find the top specialty doctors for opinions, information on treatments, personal stories, and support. Cholangiocarcinoma is a devastating, complicated, and tragic disease. This Foundation is a support to families in a time of need when we feel so alone and so helpless. The annual conference hosted by the Foundation brings patients, caregivers, and doctors together to find a cure. The specialist we went to at Mayo Clinic, Dr. Gores recommended we go to the conference. The knowledge we gained about the disease prepared us for the devastating complications associated with this disease that were to come. The relationships formed with others affected by this disease will last a lifetime and we know these wonderful people because this Foundation brought us together to support one another. This disease needs awareness, research, and a cure. The Cholangiocarcinoma Foundation advocates for a cure and I will continue to support it in honor of my Dad. I miss you and love you everyday Daddy.
My wife was diagnosis with stage IV cancer. After many tests the first doctor we saw could not find the primary source and wanted to treat as unknown primary. When we got a second option it was discovered she had Cholangiocarcinoma, or bile duct cancer. We had never heard of Cholangiocarcinoma. After she began treatments we began to learn more about Cholangiocarcinoma; I found the Cholangiocarcinoma and began to read other’s stories, much like ours. I ordered a copy of 100 Questions and Answers about Biliary Cancer and found other resources that could only be found on The Cholangiocarcinoma Foundation website. It is by far the best place to find information about Biliary Cancer; to find doctors and support.