My mother was diagnosed with cholangiocarcinoma and this was the best resource that I found and used when doing research about this rare disease. This is a very small nonprofit with dedicated and knowledgable staff and I decided to help out by volunteering.
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.
My husband’s diagnosis of bile duct cancer was frightening. We knew nothing about this type of cancer and felt so alone. It did not take us long to learn that little is known about this disease and that a great deal of research is needed for early detection, diagnosis and treatment. Fortunately, we also learned how valuable of a resource the Cholangiocarcinoma Foundation (CCF) is for those whose lives have been touch by this deadly cancer. Whether you are a patient, caregiver, advocate, or medical professional, the CCF offers support, education and collaborative opportunities for everyone! For me, the fact that the CCF keeps its overall focus on finding a cure is crucial as well as comforting.
This is an incredible caring group of people, many of whom are volunteers, who try to support patients and caregivers dealing with this rare cancer.
Their website is very informative regarding the disease, treatment options, treatment centers and much more. And they have a discussion board where people can share their feelings, ask others about their experience(s) ask moderators for recommendations and provide a forum for this group to support each other.
The members of the organization are very helpful and work extremely hard to foster relationships across the medical community to find move avenues for treatment and for preventing this disease.
A special group of dedicated people who provide tremendous empathy and support. I learned about the Cholangiocarcinoma Foundation when my wife was diagnosed. This was the first organization I found when trying to understand about this terrible cancer. In addition to providing a great deal of information regarding the disease, resources, clinical trials, etc. I went to this site every day to their discussion boards. What an amazing group of moderators who made each person feel special while trying to help them through every challenge faced as a patient and caregiver. I am grateful to the people in this organization and to the many volunteers willing to help others.
My dad is a survivor of Cholangiocarcinoma. We have hiked to raise money for this foundation over the years. It is so important for people to have somewhere to turn for information regarding this frightening disease. We need to raise awhareness about Cholangiocarcinoma and raise money to help research and find a cure. Our Hike for Hope in Ivoryton Connecticut does just that. Thank you Cholangiocarcinoma Foundation.
When my Dad was diagnosed with cholangiocarcinoma, one of the first things I did was turn to google. I knew nothing about the disease, but I knew it was bad. I was determined to immerse myself in all the information I could as quickly as possible. I found the Cholangiocarcinoma Foundation and immediately began devouring all of the amazing information they had on the site. Their site content, social media presence and simply their existence made us feel so much less alone in the face of a terrible diagnosis.
My Dad lost his battle with the disease 4 months after diagnosis, but my family remains active in fundraising and supporting the organization in any way we can. We know what's it like to have a loved one suffer, and this Foundation goes a long way in educating and empowering patients, their caregivers and their providers.. We are so grateful they exist!
Cholangiocarcinoma Foundation is a wonderful organization with a mandate to bring support to patients. We bring researchers and patients together to share knowledge, resources, and emotional support. Since cholangiocarcinoma exists as a rare disease, even community oncologist are not always up-to-date about this support group. Please join us to spread the word for this worthwhile cause.
For the past 3 years I have partnered with the Cholangiocarcinoma Foundation in an effort to raise funds. Next month with be my 3rd annual Carnival for the Cure event to raise awareness of this rare cancer and honor a family member who died from Cholangiocarcinoma. The first two years we split the funds between the Cholangiocarcinoma Foundation and a local cancer hospital where the family member was located. I can say that the the Cholangiocarcinoma Foundation was extremely supportive of our event and was willing to help in any way they could. We did not have the same luck with the other charity, and it seemed like we were to small for their support. The Cholangiocarcinoma Foundation sent information and bracelets to give away to all our guests, and did not hesitate at any request. It has been a pleasure working with them, and to play a small part in helping them continue their efforts to find a cure and provide support to those effected.
Cholangio carcinoma is a rare, usually deadly, overlooked cancer.
The CHOLANGIOCARCINOMA FOUNDATION first and foremost makes people aware of this disease, brings patients and families together with an incredible outreach program, and annual conference, an online network, and print materials. The conference, held in Salt Lake City provides free attendance to patients which is extraordinary. Unlike many organizations, the staff is not pulling exorbitant salaries and contributions truly go toward research and patient care. The CHOLANGIO CARCINOMA FOUNDATION is truly an exemplary non-profit organization.
When I was diagnosed in 2008 with cholangiocarcinoma (CCA), It was an unknown illness. There was very little information available and it was very dated. My wife Pat and I felt alone, with little hope since we had never heard of anyone else having such a rare condition.
My oncologist, for whom I have the utmost respect, told me about this organization and it has been a blessing ever since. I connected to the web site and was surprised at the abundance of information available along with support, resources and contacts.
We have attended the last two conferences in Salt Lake City and I had the honor to present my story at the 2017 conference. Having met numerous others who are dealing with this cancer and fighting the battle, we no longer feel alone. We have gained friends with whom we maintain contact and I have even been contacted be several fellow patients to help them understand how we have dealt with biliary cancer.
This is an amazing organization, run by fantastic and caring people. I have recommended CCF to many patients and always received positive feedback from them. I will be eternally grateful for the help I've received from the Cholangiocarcinoma Foundation.
The Cholangiocarcinoma Foundation is an inspiring organization, bringing support and hope to patients diagnosed with this rare and lethal cancer, and to their families and caregivers. Two areas merit special mention. Through its outreach to clinicians and scientists and through its research grant programs, the Foundation is bringing this uncommon, complex cancer to the attention of young and upcoming researchers, a smart investment that lays groundwork for new treatments and someday a cure. Also, the Foundation's education programs channel up-to-date, practical information to patients and caregivers, through webinars, social media, publications and a discussion board. A truly standout organization!
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.
The a Cholangiocarcinoma Foundation means so much to so many people including patients, caregivers, family members, and medical personnel. This devastating disease needs awareness and research and the Cholangiocarcinoma Foundation provides support to those in need. This foundation is one of the only groups that brings together patients, caregivers, researchers, doctors, and pharmaceutical companies to unite for a cure. So many individuals and families would feel so lost and alone if it weren't for this foundation. I can speak to all of these statements because my Dad was a patient. The Cholangiocarcinoma Foundation gave my family hope, gave my father hope, in a time where we felt there was none. I am forever grateful for this organization and the need for it is beyond measurable.
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.
A caring group of caregivers, researchers and doctors all working toward a cure. They're a fantastic organization putting their money to good use.
This foundation is incredible, it's staffed by some of the most genuinely caring people in the world. The doctors, researchers, patients and caregivers are treated like family. Every year they just get bigger and better. I couldn't recommend this organization enough. They are fantastic!!
There are not enough stars to rate the extraordinary Cholangiocarcinoma Foundation. Every day the Cholangiocarcinoma Foundation shows how a small group of dedicated people can improve the lives of all those whose lives touch this disease- patients, caregivers, researchers, medical personnel and institutions. The Cholangiocarcinoma Foundation does this by providing a digital interactive forum for sharing informed information, sponsoring focused research and connecting across specialty boundaries to bring the very best ideas for treatment to everyone. And they do it everyday.
When Mom was first diagnosed with cholangiocarcinoma (CC), it was a cancer we had never even heard of but quickly learned it was a "bad one". We learned that it was very rare, and is typically diagnosed too late for successful treatment. The CC Foundation offered information and support that we could not find elsewhere. I came to learn how it was founded by people and families who were also touched by this horrible disease. They saw there was a gap in knowledge, support, treatment options and research and started the foundation to address the gaps. So much is done by volunteers. Information on their website was instrumental in allowing us to have Mom treated and still be alive today. In the four years since I have interacted with the foundation, I have seen tremendous strides in the treatments and hope available to CC patients. Much of this can be attributed to the work of the CCF. In addition to the discussion board for patients and caregivers, they support research and getting the medical community involved in coming up for ways to treat CC. I am amazed how a small organization founded by people who have lost loved ones has accomplished so much and improved the future prognosis for many CC patients. However, there is still so much left to accomplish. It asks for role below- I donate a little but wish I could afford more, I have the title "moderator" on the discussion board so maybe a volunteer, but mostly just a very thankful daughter who found this organization and wonderful group of people. They are helping patients survive, but also supporting the too many who still succumb to this lousy disease.
Cholangiocarcinoma is considered a rare cancer. As such, not only is a patient confronted with the daunting fact that a minority of funds are being spent on researching it, the patient must also deal with the emotional aspect of quite possibly never meeting or communicating with another individual that has this disease, subsequently feeling alone, isolated and possibly defeated.
The Cholangiocarcinoma foundation erases both of these aspects for patients. They diligently pursue the academic research of assisting in finding a cure for this disease, and unlike other cancer foundations, they actively assist patients in learning about how to contact one another...which is a major mental relief for many. It is rare, very rare, to find an organization that is focused on two symbiotic aspects of a disease in such a professional, yet human manner.
I lost my brother, Clint Wheeler to Cholangiocarcinoma in November of 2014. He was 48 years old and left behind a wife and 2 children, both under the age of 14. When diagnosed in March of 2014, I searched frantically for resources as well as facilities to battle this rare underfunded, and often misdiagnosed cancer. The Foundation provided our family with invaluable information on the best facilities, doctors and trials available for patients with this insidious and vicious disease. Stacie Lindsey, President of the Foundation, also shares my family's story with the loss of her brother in 2005. She is a vast well of knowledge, compassion and passion and works tirelessly with her team to support other patients and their families in the hopes to eventually raise enough funds to find a cure for a disease that only affects 2% of Americans and gets very little attention and funding. I am intensely grateful to the foundation for continuing to provide a safe haven for patients and their families afflicted with this frightening and misunderstood disease. You are a beacon of invaluable information, but also and more importantly a place of understanding and compassion.
With all of my thanks and my heart,
My name is Greg Friedmann and I was diagnosed with Extrahepatic Perihilar Cholangiocarcinoma in April of 2014. I did a lot of research and compared to other more common cancers there was little experience among the doctors and hospitals in and around my home (Cincinnati Ohio).
I then found the Cholangiocarcinoma Foundation and instantly had access to the information and expertise Stacie Lindsey has amassed over the last ten years. In my opinion this Foundation has brought the awareness of this disease from obscurity into the light of day and along the way brought together some of the best and brightest from around the world to help find a cure. The Foundation has also raised millions of $ and put it to work with theses scientist, doctors and research hospitals.
I am currently NED because of the expertise that exists today and I feel that because of the Cholangiocarcinoma Foundation and what it makes available to patients such as me, I am well equipped to deal with the eventuality of a recurrence heaven forbid.
Thank You Stacie and all involved that make the Foundation what it is.
I'm in awe of the talent, committment, and passion of CCF.
When my mom was suddenly diagnosed with cholangiocarcinoma, the CCF was an invaluable resource. They provided information and a network to help us navigate this disease about which we knew nothing. They were very supportive and have been doing great work over the years.
This foundation does an outstanding job funneling a high percentage of donations to patient programs, research grants, and tools to facilitate international collaboration in cholangiocarcinoma research. The foundation heavily leverages volunteers and virtual work spaces to keep overhead costs extremely low.
The Cholangiocarcinoma Foundation has made great strides in advocating for increased research and grants for bile duct cancers since the Foundation was formed. As a result, research is swiftly progressing and crossing borders for greater impact and support for patients.