This group has been an incredible resource through what was been the mist difficult period of my life. The information and education they provide is invaluable and way beyond what my busy oncologist can offer. The advocacy for advances in medical knowledge and the commitment to providing hope and therapies is unbelievable Finally, the emotional support for this rare cancer has been a lifesaver. I’m so glad this foundation is on the frontlines battling for us. Thank you!
I was diagnosed with cholangiocarcinoma in 2010. I was scared and didn’t know anything about this rare cancer. I found The Cholangiocarcinoma Foundation and they have been such a blessing to me and our cholangiocarcinoma community. They help patients navigate treatment protocols, they provide support groups, symposiums, conferences and webinars to learn the newest treatment options. They have created such a wonderful community of patients, caregivers, researchers, medical professionals and industry experts, all working together for the same goal, improved survival rates and a cure. I consider The Cholangiocarcinoma Foundation and community my second family.
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The Cholangiocarcinoma Foundation was the first place that offered me HOPE and support when I was diagnosed in 2010. I’ve never felt alone since finding them and now I get to be a part of giving back as a volunteer and patient advocate.
CCF supports research to find a cure for this rare cancer, as well as provides support and information to patients. Without them, I'd be lost and alone in trying to find care for my cancer. With their help and guidance, I have become a mentor to other patients facing the same disease.
The Cholangiocarcinoma Foundation (CCF) has been a source of Hope, Love, and Support. CCF has given me the opportunity to be a research advocate, caregiver mentor, and to promote awareness and fundraising events. Through my involvement with them, it has allowed for me to give back to others, which has helped me tremendously in my grief process. Volunteering for CCF has allowed so many of us to come together to support each other through life’s most difficult times. In 2016 when my Dad, Dave Glenn, was diagnosed with cholangiocarcinoma there were very little treatment options for this extremely aggressive and rare cancer that took him in just 4 months. I have seen research develop tremendously over the past 8 years, and although these treatments will not help my Dad, it was his will to make it better for the next guy and his daughter. CCF has allowed me to follow through on that promise that I made my Dad that we would make it better for the future. My Dad’s legacy has always been love conquers all and CCF has allowed us to come together in love and support for one another to overcome this disease. I sometimes think of what if? What if there was no CCF? And my heart knows that this world would be a very sad place for all of us affected by cholangiocarcinoma. They have given us a voice and a platform to make change, a place to heal and move forward, although we will never move on. My heart is beyond grateful for Stacie, her family, and all of the CCF staff and volunteers that are now considered family to me. CCF brings together all stakeholders-patients, caregivers, clinicians, and researchers because at the core of this foundation we know that we all need to contribute to make the change that is so very needed, and that goal is to make cholangiocarcinoma a treatable disease and ultimately find a cure.
Excellent support we received while my father was battling a terminal and very rare cancer. This organization is also very active in supporting regional groups, patients at various stages of disease, while at the same time supporting research. They also have an advocacy arm that is quite successful at getting new treatments approved for this very underfunded, rare but very lethal disease. They really do a lot with very limited resources.
We were diagnosed Jan 8, 2021.After hours of research , we understood the perils of this rare and aggressive cancer.I stumbled across some tutorials with Melinda Bachini as the moderator and learned about her difficulties along with many others.We decided to attend the 2022 CCF conference, which has a terrific source of information and it was inspirational for we connected with other patients, caregivers, researchers, scientists and the best oncologists in the world..
Through CCF, we gained very valuable insights to handle this anguish and terrifying diagnosis.
Every cancer patient will recall the despair of the initial revelation of this dreadful diagnosis.
However with the CCF, we became more knowledgeable and composed so that our treatment options were easier to understand while gaining a more positive and hands on mind set..
I was diagnosed with Cholangiocarcinoma in early 2015 and was so depressed and not knowing which way to turn. I fortunately was able to find the appropriate treatment options (I did not know about the foundation) and here today in a position to support other patients and caregivers through the Foundation. Earlier this year, I became aware of the Foundation (attended their conference) and all of the wonderful work they do for cancer patients like myself. I gladly became a Mentor and currently working with numerous patients and their families and enjoy every minute of it - in that I'm hoping to provide assistance and comfort. Whatever I can do to give back is my primary goal without question. Rick Brookes
The Cholangiocarcinoma Foundation changes (and saves) lives. When a loved one is diagnosed with a rare cancer- it is scary, isolating, and heartbreaking. The Cholangiocarcinoma Foundation turned the unknown into hope. They provide information on treatments, clinical trials, and research from leaders in the field in a way that is digestible to caregivers and patients, yet still supports an environment for scientists and medical professionals to collaborate in. The patient and caregiver centered mission of the foundation is nourished through the CholangioConnect program, which has allowed me personally to build friendships and bonds with people who have walked the same difficult path. The Cholangiocarcinoma Foundation makes sure that no one will have to navigate this journey alone, and that is truly priceless.
I was diagnosed with stage 4 intrahepatic cholangiocarcinoma Dec 2021. Getting a diagnosis of cancer was devastating. Then to find out that it is rare and incurable was like a sucker punch to the gut. I immediately started to do some research and happened upon the Cholangiocarcinoma Foundation website. The resources there confirmed that I was getting my care at the right place and confirmed that what my oncology team recommended is exactly the standard of care recommended by the Cholangiocarcinoma Foundation. When faced with so much uncertainty and fear it was extremely reassuring. And then to also have access to so many resources, such as the mentorship program, the patient support group, and package of information that is sent to the newly diagnosed was invaluable. The Cholangiocarcinoma Foundation helped to make an incredibly difficult time easier to handle and reassured that I was getting the very best care that I could. Being given a prognosis of 4-5 years and reading stories of others who have beat those terrible odds brings me so much hope for my own situation. And now I am able to volunteer with them to help others face the challenges ahead with this devastating diagnosis. I am forever grateful to them for the resources that have helped me with my own journey and now allows me to help others.
I was diagnosed with Cholangiocarcinoma in April of 2018. That next year, I received a full patient scholarship to attend their annual conference. At the conference, I was able to meet so many patients who share my same struggles. It was then I truly felt I wasn't alone in my fears and worries. After becoming a part of the CCF community, I decided to become a patient mentor. It was my goal to help others my age navigate the confusing path that is the world of oncology. I'm not sure my family would be as knowledgeable as we are today if it weren't for the resources we were shown through the Cholangiocarcinoma Foundation. I am beyond grateful for this foundation's support and willingness to go "above and beyond" for patients and their families.
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CCF cares deeply about each patient and caregiver. The entire staff is personally invested in improving outcomes for patients and creating a stronger community for all those affected by cancer.
CCF is committed 1000% to helping patients and family members of those impacted by cholangiocarcinoma. The emotional attachment they have to every case makes you feel like family. Seeing so many people come together with compassion in a world full of hate and violence is wonderful. Thank you, CCF, for giving hope!!!!
CCF was founded by a family who wanted a better outcome for others than what their loved one experienced. This is a passionate, inspiring, and hardworking group. They are change-makers!
CCF has a lot of knowledge. The staff is friendly, supportive, and provides hope. I feel very comfortable asking questions and reaching out to them. The Advocacy team is excellent and caring. I wish more people could know about them immediately and all the information they have to offer about CCA. So many patients and families can benefit from this foundation!
The Cholangiocarcinoma Foundation has without a doubt literally saved my life. Having never even heard of Cholangiocarcinoma or bile ducts, learning I had this advanced disease left me shocked, overwhelmed and confused. Luckily I found the Foundation early in my journey and through the resources available, was able to successfully navigate through the best treatment options for me with the best team possible.
We have benefitted from the core values of CCF, Patients First, Collaboration, Innovation and Urgency. As a caregiver, I have leaned on Melinda and Lourdes for advice, participation in their monthly caregiver meetings and use the website as a resource to learn, and stay up to date with clinical trials and events happening. They are informed, passionated and proactive.
The Cholangiocarcinoma Foundation provides knowledge, free vital resources, and compassion. They truly put patients and their families first. The mentorship program, CholangioConnect, and the support groups help remove the feeling of isolation this diagnosis can often bring. Through the Foundation you find community and you will find hope.
The organization provides hope and information about this rare cancer, providing many ways to support the patient, caregivers, and families.
As a donor and caregiver to a cholangiocarcinoma patient, I am very thankful that the Cholangiocarcinoma Foundation exists! It is the main foundation serving the global community of cholangio patients, caregivers, oncologists, researchers, and others impacted by cholangiocarcinoma. They offer many patient-focused services with warmth, professionalism, and great care. For example, one of the patient/caregiver-centered services they provide is a 1:1 mentorship program called CholangioConnect. They pair patients with other patient mentors and caregivers with caregivers, etc. Plus, they offer several support groups that meet throughout each month. They also fund collaborative research initiatives with pharmaceutical companies and researchers. Plus, as far as I know, they hold an annual conference in Salt Lake City. They invite patients, caregivers, researchers, pharmaceutical companies, oncologists, their staff, and volunteers and bring them together to learn from one another. I attended this conference for the first time this past spring and was blown away by the connections I made and the information and insight I gained. I can not say enough good things about this foundation!
Well, here is goes. About a year ago now the most important person in my life was diagnosed with Cholangiocarcinoma. My little sister, we were all devastated and lost. But my sister was able to find unbelievable group of people, thanks to this foundation. Where my sister was scared and didn't know where to go, she was able to find a mentor through this foundation along with my new sister and guardian angel. The love that this group builds for those who find out the scariest news in anyone's life is amazing. My sister found her strength and now pushes for those that are lost. She has become a mentor and now helps others. The biggest thing that all this has taught me, is never settle, give it all you got. Don't let this cancer control you, you take charge and when needed reach out to your new family from this awesome organization.
This is an amazing and unique organization. It is the only non-profit in the USA focusing solely on a rare cancer called cholangiocarcinoma. They are compassionate, passionate, dedicated, and relentless in their pursuit of a cure.
I was diagnosed with Cholangiocarcinoma, and my oncologist at MD Anderson told us about the website. I am now a survivor of the disease, but the support and resources for families and patients is so beneficial. We found the foundation to have offered us a such a beneficial support system.
On so many levels, the Cholangiocarcinoma Foundation is an organization that I am thankful to find in my journey. It has been a great support and source of education.
The experience I have had, and still do, is the reason I choose to support them in their mission.
This nonprofit is very patient centered and totally focused on advancing the research it will take to find a cure for this rare form of cancer.
Once my husband was diagnosed with Cholangiocarcinoma in 2018, I immediately scoured for additional information and resources for this rare cancer. I was relieved to find the Cholangiocarcinoma Foundation in my search. They offer so many resources and financial research support. Their website is often my "go-to" spot to stay up to date on the latest research and treatments. They are a multifaceted nonprofit that serves patients, researchers, caregivers, etc.
When you are diagnosed with a rare deadly aggressive cancer you look for hope.....for me...I found hope with the Cholangiocarcinoma Foundation(the CCF). This incredible charity founded by the sister of someone stolen by cholangiocarcinoma, funds much needed research, assigns mentors upon request to those needing guidance with their journeys, and so much more. To me personally as a Retired Registered Nurse with over 23 years of nursing experience, the CCF gives patients hope. The CCF holds a yearly conference that invites both the leading Docs in cholangio, patients and drug companies to meet and liase in a way that fosters incredible relationships and support while sharing the latest and greatest treatments currently available for cholangiocarcinoma. With cholangiocarcinoma being difficult to diagnose, often diagnosed at a later stage, having limited treatment options and a poor outcome patients need hope. JAMA predicts that liver Cancer and intrahepatic cholangiocarcinoma are predicted to be the 3rd leading cause of cancer death by 2040. What impresses me most about the CCF is how they have fostered incredibly relationships with all the leaders in the Cholangiocarcinoma field and have garnered great respect from both them and patients and their families worldwide. I call the Cholangiocarcinoma Foundation my center of hope.
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Being diagnosed as having cancer turns one's world askew, but having a rare cancer makes one feel even more alone. By 2040 it is estimated that cholangiocarcinoma will be the 3rd most common type of cancer yet now most people don't know about it and doctors often have a difficult time initially diagnosing it until it has advanced to a more advanced state. I never met another person diagnosed with bile duct cancer until over a year after I was diagnosed. That was a long, lonely nerve-racking year. When I finally found the Cholangiocarcinoma Foundation, I felt like I was "home." These people understood what I was going through having walked in my shoes or that of my caregiver children. It was such a sense of relief and hope to find detailed information about this disease and the work being done to find useful treatment options.
I went to my first conference put on by the foundation and it was so amazing. It's the only medical conference where you can sit next to other patients and caregivers, but also oncologists, oncology nurses, researchers, government officials, and pharmaceutical representatives all working together to learn and to effect a cure. Those three days so lifted my spirits and made me so grateful for the foundation and its work.
I still keep in touch with others that I met during that trip to Salt Lake City. We cheer each other on, mentor others, exchange treatment information, and remember those who succumbed to this killer disease. I will always donate to this wonderful nonprofit and will assist in its mission.
The only US non-profit dedicated exclusively to supporting families affected by cholangiocarcinoma and working to find a cure.
The Cholangiocarcinoma Foundation is top notch! They provide help for patients and caregivers that cannot be found anywhere else!
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My best friend was diagnosed with cholangiocarcinoma in May 2018. She was without hope until she connected with CCF. They were invaluable in the guidance they provided. She is doing well today. CCF’s goal is my own goal.....together we continue to work for an improved quality of life and a finding a cure for all cholangiocarcinoma patients.
I recently left a career in TV and print media to work for a charity that I believed would solve a major societal problem. I investigated several opportunities in the nonprofit sector. I was seeking a charity that's focus on any fundraising was to solve a problem and the majority of those raised funds were earmarked to solve that problem instead of going all toward administrative and operational costs. I also wanted to find a nonprofit that had a strong and unique share of voice and was heralded with the utmost integrity. I found that and more at the Cholangiocarcinoma Foundation. I was fortunate to also be hired as the nonprofit's Director of Communications. The Foundation is collaborative, innovative, and acts with patients and caregivers in mind with everything that it does and who it associates with to render cholangiocarcinoma treatable. I'm truly grateful for the positive company culture and the good stewardship of all funding that heightens awareness, research, and advocacy for cholangiocarcinoma - a lethal bile duct cancer. Working at the Foundation is a dream come true!
Cholangiocarcinoma is a rare cancer. It doesn't receive the attention other cancers receive,and finding information is more difficult than other cancers. The Cholangiocarcinoma Foundation is a lifeline for the newly-diagnosed and for longer-term warriors. The Foundation provides educational resources, advocacy, helps locate trials,and above all,links fellow patients with emotional support via conferences, Facebook, YouTube and Zoom. It is an outstanding group of leaders and members.
Cholangiocarcinoma Foundation has helped many people, and I have been fortunate enough to volunteer for this nonprofit for the past few years. This foundation has been very helpful, and has plenty of information for those in need of help and finding people that are going through the same thing as them. There are many different resources within this foundation that people can utilize. Everyone in this foundation is always very kind and helpful.
When my Dad was diagnosed with this rare disease in July of 2019 it was only a few months before my wedding in a different state and it was so hard. This website allowed me to pull on the knowledge of those that have been down the road before and provide the support that i needed. Then after his passing they continued to help with the grief. I hope that no one will ever have to go through something like what i did and this website helps to make the best of a bad situation.
I was completely unaware of Choloangiocarcinoma until my Sister was diagnosed. It took us all by surprise. She was diagnosed September 16th and passed on November 20th. My niece found CCF and shared posts and information on Facebook. The foundation has information for Patients, Providers and Families. It is an under statement to say that it has been a challenging year. I am happy to volunteer for the foundation. Organizations like CCF bring resources and focus to this rare Cancer. Volunteering for CCF has been helpful. They are respectful and understand. I am happy to contribute to the organization and the cholangiocarcinoma community.
I was diagnosed with Intrahepatic Cholangiocarcinoma in Sept 2015. My local Oncologist, Dr Deborah Lindquist, put me on the standard treatment of GemCis chemo...Gemcitabine and Cisplatin. I had been on that chemo for 16 months when I happened to come across an article in a magazine featuring The Cholangiocarcinoma Foundation and Melinda Bachini. The Foundation's annual conference was noted in the article and we excitedly attended our first one in January 2017. The combination of patients, caregivers, doctors, researchers and pharmaceutical attendees was amazing. We learned so much about this rare cancer, it's treatments, trials, etc., but we were touched the most by patients and caregivers that shared their personal stories or hope, triumph and loss. It was truly amazing and we've now attended three annual conferences in person before this year needing to go "virtual". Amazingly there were many more attendees online this year from all around the globe.
We returned home from our first conference so full of hope and ideas on how we might proceed, the "what if", when my treatment was no longer effective. We went over the conference and info with my Oncologist. She very willingly referred me to Mayo Phoenix, even though I was not within the protocol for surgery. We just wanted a Plan B before it was needed. At Mayo I was seen by a new Oncologist, had new scans which were reviewed by a Mayo surgeon, Dr Adyr Moss, who said he thought he "could get it outta there". And he did!
So within 4 months of attending our first CCF conference I had a successful resection, removing the right lobe of my liver, numerous lymph nodes and gallbladder with clear margins. I am thrilled to say that I am now 3 1/2 years NED (no evidence of disease). I credit so much of this to the Foundation for the information I obtained at the conference which I could then take home and apply to my situation.
The Cholangiocarcinoma Foundation, it's board, staff and volunteers are such an amazing group and deserve all the accolades that can be bestowed upon them. They are truly a blessing to all who come across their path.
When you or your loved one receives the diagnosis of cholangiocarcinoma it is devastating. And then when you research statistics it is even more devastating. In addition to the devastating diagnosis, these is initially a sense of isolation because this is a rare cancer.
Through a social group, I connected with a gentleman who lost his husband to cholangiocarcinoma and he very kindly directed me to the Cholangiocarcinoma Foundation for help in navigating the many hurdles ahead. Through the Cholangiocarcinoma Foundation, I’ve been able to research oncologists with experience with this type of cancer, participate in educational webinars, connect with other caregivers, and participate in fundraising initiatives.
Most importantly, we are so
Incredibly grateful to have the help of a phenomenal patient advocate. This patient advocate’s knowledge and compassion has made a huge difference in that we no longer feel as alone in our fight. And that is the difference this amazing Foundation makes in lives.
I first came to the foundations website in 2012 looking for a long term survivor with more than ten years past diagnosis, which I found, never dreaming I would eventually become what I went there for years later. Over time, I became a moderator, and a regular on their facebook pages, a volunteer and participant in a wonderful information sharing organization It has helped me and countless others deal with the most difficult challenge of their life. I am Patrick ( AKA Hercules ) and I approve of the Cholangiocarcinoma foundation !
CCF is an amazing source of information for Cholangiocarcinoma diagnosis. The volunteers give 100 percent of themselves so they can help selflessly the newly Diagnosed, truly priceless. I can thank them enough for their work.
I thank my lucky stars for the day I was shepherded toward that powerful force for
good known as The Cholangiocarcinoma Foundation. There I found people working non-stop on ways for the community (patients, caretakers, health care professionals etc) to connect, learn, and contribute to the important cause of defeating this cancer. There are no words to express the gratefulness I feel.
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Words cannot convey what a source of hope and support the CC Foundation has been to me. The staff, including Melinda Bachini and Patty Maxim, are so positive and caring, not to mention inspiring, and the information available on the CCF website has been very helpful. Plus the annual conference is an amazing opportunity to learn from, and interact with, top experts in the field and to see first-hand how hard people are working to find answers for patients.
When I was diagnosed with cholangiocarcinoma in 2008, there was very little information to help the newly diagnosed. Over the past several years, this wonderful foundation and group of caring individuals has significantly changed the situation. The amount of info regarding all areas of symptoms, expectations, possible treatments and trials has grown immensely. The conferences have allowed us to meet other patients, doctors, researchers and volunteers to let us know we, as patients, are not alone.
I communicate with many cholangio patients, including newly diagnosed, and always recommend the CCF site resources.
I will be eternally grateful for their supports and the work they do.
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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 has made an incredible impact on my life. My moms diagnosis with Cholangiocarcinoma has been challenging and scary but the foundation has held our hand every step of the way offering support, information, education and advocating tirelessly for all cholangiocarcinoma patients.
The Cholangiocarcinoma Foundation is CRUCIAL for any patient or caregiver. The passion, compassion, brilliance, and dedication of each and every member of the staff is unparalleled. It's hands-down the best and most efficiently run non-profit I've ever seen. It's been a privilege to serve as a volunteer for CCF for the past 4 years.
I am CC patient 4 stage since 2015, from Russia. I would like to thank CCF VERY MUCH for all they do. CCF played a great role in my cancer story, it gave me a useful technical information for surviving in 2015-2016 (about clinical trials, molecular profiling, immunotherapy, etc - all that I went through to survive), psychological support, other patients experience. Till the moment I am in close everyday connect with the site and related FB groups. The team is very open and always ready to respond. ❤️
This Foundation is THE most amazing resource for anyone who is diagnosed with cholangiocarcinoma or taking care of someone who is. In everything they do, patients are always their first priority. They have amazing resources for newly diagnosed patients to help them find the best care and give them hope during their fight. The work they are doing is so impactful and life changing, in fact, this year they had their own first FDA approved clinical trial. Every day they work towards their ultimate mission of finding a cure to this cancer. I can't thank them enough for all the work they do! :)
They're a fantastic group dedicated to helping others. They encourage research into a rare form of cancer and support doctors, caregivers, and, of course, patients.
I was introduced to the Cholangiocarcinoma Foundation by my mother, a patient with cholangiocarcinoma. The Foundation provides a format for patients, caregivers, and medical professions to interact both formally and informally. The community they created is an invaluable resource to many... I know it was for my family during my mom’s difficult cancer journey. While they do amazing work with advocacy, research, and searching for a cure, they also provide something that money can not buy, hope— to many people when they need it most. I feel lucky to be a volunteer for the Cholangiocarcinoma Foundation. They have given me a positive and meaningful outlet to channel the grief that accompanies losing a loved one to cancer.
I was diagnosed almost three years ago with intrahepatic cholangiocarcinoma. I was stunned, frightened and overwhelmed. Unlike cancers that receive more recognition, cholangiocarcinoma is less known, more rare. Thanks to this amazing foundation, I found education and support and friends. The yearly conference is designed for patients, caregivers and medical professionals. The entire program is available online. The support system of the staff goes over and above expectations. I have worked with nonprofit organizations and the CHOLANGIOCARCINOMA FOUNDATION is exceptional.
Since the death of my husband due to cholangiocarcinoma (bile duct cancer), I have donated to and volunteered for the Cholangiocarcinoma Foundation (CCF). In just a brief amount of time, I have watched this truly outstanding organization become a leading U.S., and increasingly international, resource in research education and public awareness for this deadly disease. Just recently, the CCF announced a new partnership with Komodo Health, a first-of-its kind agreement linking a cancer advocacy group with the leading healthcare analytics and insights delivery company to advance the treatment of cholangiocarcinoma. The agreement allows the Cholangiocarcinoma Foundation to access previously inaccessible information, data, and disease-treatment reference points through Komodo Health’s largest, most actionable healthcare map in the U. S. This initiative is just one example of how the Foundation’s focus on research and collaborative partnerships provides tremendous support and hope for both patients and caregivers!
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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.
When my mom was diagnosed in late 2016, I had never heard of such a cancer. It was a definite shock and one feels helpless, not knowing where to turn. The doctors were so negative and emphasized the poor prognosis and the limited treatment options. I was drowning with fear, extreme sadness, and was overwhelmed. I am glad to have found this Foundation and took the step to to join and connect a couple of weeks after diagnosis to learn as much as possible and connect with others going through the same. I am so glad and grateful for the advocates who have the passion to work and help others. I also chose to help the Foundation. Thank you to everyone! The more contributors the better and easier it is to help each other on this journey as caretakers and patients.
I was diagnosed with cholangiocarcinoma in November of 2015. At the time I was 28 years old, and no one in my immediate support circle had dealt with cancer before, much less a rare and difficult to treat disease like chonagiocarcinoma. The evening of my diagnosis I turned to Google. The first link I clicked provided a dire (and outdated) summary of what I was up against, and it took no small amount of will to subject my emotions to a second click of the mouse. I am so grateful that I did.
The Cholangiocarcinoma Foundation's website was the second that I visited laying in my hospital bed that evening, and it turned into my homepage in the months that followed. I signed up for the discussion boards, and a fellow patient called me on a Saturday to connect and help me navigate the resources. When I needed help understanding the jargon, I used the Foundation's resources and Newly Diagnosed section. When I was hungry for hopeful updates around scientific progress, I watched videos from the Foundation's annual conference. When I was scared of how treatment might change my body and my life, I posted my questions on the discussion boards and was flooded with answers and love.
I am now over two and a half years into my battle with cholangiocarcinoma, and the Cholangiocarcinoma Foundation continues to be a fixture in my life, both in ways known and unknown. I still rely on their resources for support and scientific enlightenment, but I also benefit from the research they sponsor and the connections they are building between physicians around the world. The Foundation serves as a pathway for medical collaboration, something that I as a patient may not see, but benefit from as these brilliant minds work together towards a cure.
The Cholangiocarcinoma Foundation is THE go-to organization for this horrible disease. Every day, they're working with researchers, clinicians and institutions to work towards the cure.
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A caring group of caregivers, researchers and doctors all working toward a cure. They're a fantastic organization putting their money to good use.
I was diagnosed with Cholangiocarcinoma in April of 2014. This is a very rare cancer and the information available was scarce and very scary. Thankfully I found the Cholangiocarcinoma Foundation. Because of the Foundations efforts I was able to connect with the Cancer Hospitals, and Doctors best suited for treating me. The Foundation also connected me with other patients fighting this disease. I attended the Cholangiocarcinoma Foudation Conference for the first time in 2017 and was amazed at what they have accomplished in the 11 years of it's existence. The presenters were some of the top researchers and doctors from the best cancer centers/hospitals in the world. My cancer is in remission but CC has a very high rate of recurrence and the Foundation continues keep us patients current on the latest treatments and services available which gives me the confidence I am prepared to address a recurrence. The Foundation with all of its very dedicated volunteers work all year round raising awareness, fundraising and making grants to the appropriate organizations to further research and development of treatments for this disease.
The Cholangiocarcinoma Foundation is saving lives from being cut short by this disease.
Greg Friedmann
Grateful Survivor
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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.
Thankfully
Greg Friedmann
I became aware of CCF four years ago after being diagnosed with intrahepatic carcinoma and was looking for more information on this type of cancer, recommended treatment and prognosis. Their booklet "100 Questions and Answers About Biliary Cancer" was very helpful. CCF has expanded their services to include sponsoring yearly conferences for researchers, health professionals, patients and caregivers. The conference gathers researchers from around the world to present the latest finding on diagnosis and treatment. These presentations are available on the CCF website for everyone to read. Additionally, CCF fund raises and supports further research. CCF also produces webnars on topics useful for patients and caregivers and hosts chats where people can talk with others to get support. This is the only organization that provides comprehensive services for those affected by cholangiocarcinoma.
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.
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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.
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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.
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!
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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.
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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.
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,
Rainey Foster
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.
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!
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.
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.
Thank you.
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.
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.
After our daughter was diagnosed with intrahepatic cholangiocarcinoma at age 45, we reached out to the foundation to find others and for information. They were very helpful. I support this organization as we must continue the search for a cure. We lost our wonderful girl to this devastating disease on Aug 20, 2016.
The Cholangiocarcioma Foundation is caring and personal. The staff and many volunteers put their heart and energy into making the lives of the patients and their families and caregivers better. The outpouring of support on the discussion board is overwhelming. This Foundation is growing and is THE source for those suffering from this rare form of cancer.
I discovered the foundation shortly after my diagnosis with Cholangiocarcinoma. The information they provide as well as the forum for patients, caregivers, and others to share information and experiences with this terrible, rare, cancer has been priceless to me and my family.
Truly a GAME CHANGER...I can attest that without the advocates, discussion board, and the referrals to physicians who truly CARE, I will be at loss in trying to help my father manage his diagnoses and treatments. I am also impressed they have now Spanish services now. If you can please, please, please donate money as much research is needed for this unheard condition so much that not all hospitals/surgeons know how to diagnose it. This is how I found out this foundation when the first medical team we approach were lost.
In 2012, I reached out to the foundation when are mom was given a short time to fight this cancer. The foundation inspires me to help others. I remember setting up our first fundraiser. We needed 100 CC bracelets. I called and reached Stacie Lindsey, the President of the foundation. She kindly overnighted tbe bracelets. Since then, I've been a volunteer. Love this foundation and the people behind the scenes who give their time & efforts to create change.
I found The Cholangiocarcinoma Foundation shortly after I lost my wonderful husband to biliary cancer in 2012. I continue to be amazed and proud of this wonderful organization. They strive everyday to do their best for those diagnosed with this disease along with the people who love and care for them. From support to education to research for the cure, The Cholangiocarcinoma Foundation deserves every kudo and accolade that comes its way, just ask anyone who has been touched by their compassion and generosity. Best non-profit? The Cholangiocarcinoma Foundation has my vote!
I want to recognize the CC Foundation for what they do 24 hours a day, 7 days a week, every week of the year. As a CC patient, I've received both emotional and treatment support from other foundation discussion board members through the diagnosis through treatment and post treatment of my cholangiocarcinoma. I think the best way to see just how great a job an organization like this is doing, is to see how many past patients and caregivers continue to come to the boards and help others in the same boat. They believe that strongly in this organization. I must say that though I am not one of the moderators, I frequently make comments on the boards either with personal experience or with emotional help for a patient or caregiver. It isn't easy being a patient with CC and posting sympathy to a caregiver who has lost a loved one to this disease, but I've received so much from the CC discussion boards, I feel that I should pay it forward and this organization is the perfect place to do that.
I have two loved family members who have passed from this disease. The Foundation has provide tremendous support and a vast array of resources for my family. It’s a Foundation that gives those impacted by cholangiocarcinoma ("CC") hope for a cure and aids to improve the quality of life for those affected by cholangiocarcinoma. The Cholangiocarcinoma Foundation has achieved progress year over year in its mission. I have witnessed many great strides including not only encouraging collaboration among the CC medical community, which is absolutely necessary for a rare disease, but also making that collaboration happen. This has aided in the education of others, both within and outside the medical community, to gain familiarity with the disease and further our understanding through research.
The Cholangiocarcinoma Foundation is an incredibly invaluable foundation that serves so many who are touched by this rare disease. As a patient, and an advocate, I can not say enough about the support, encouragement and hope that has come from this amazing group of people. They truly care, and are doing everything in their power to find a CURE.
We are very happy with this foundation, the staff is amazing, they care about you 24 hours a day! They try to make a difference with helping to find a worldwide cure for this rare and agressieve cancer that hits more and more people every day.
I found the Cholangiocarcinoma Foundation when trying to find some answers about this relatively unknown cancer when my father was diagnosed in 2011. This organization provides not only answers to questions pertaining to a cholangiocarcinoma diagnosis, but also an amazing support system for those diagnosed and their loved ones. Information from others' experiences helped in understanding treatment and gave me a way to share my father's experience. Although my father passed away in 2012, I am still a huge advocate for bringing awareness and hope to continue volunteering to bring more understanding of this cancer.
The Cholangiocarcinoma Foundation is an organization that one can support with absolute confidence. When a family member was stricken with this disease, the Foundation was instrumental in providing information and assistance. The Cholangiocarcinoma Foundation operates on a tight budget and no monies are every wasted. It is my understanding that they are involved in numerous important projects to promote additional research around the globe. I am pleased to give the Cholangiocarcinoma Foundation my highest recommendation.
My husband and I had never heard of cholangiocarcinoma until the day we received his diagnosis in 2011. An internet search for information led me to the Cholangiocarcinoma Foundation. This wonderful organization provided us information and support throughout his two and a half year journey. Although I can no longer help my husband, I now serve as a volunteer for the Cholangiocarcinoma Foundation. I know that my time is put to get use and that my donations are used to fund research that may one day eradicate this difficult and deadly disease.
The Cholangiocarcinoma Foundation was a great help in providing our daughter with information and direction to handle her fight with the disease. It also gave her a focus to use her talents in helping others to cope. We feel the foundation in using the donations they receive to fund research is the best way to help others and plan to support them in honor of our beloved daughter.