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Giving Tuesday 2022
Thank you to everyone that participated in Giving Tuesday 2022! Donations Last year on Giving Tuesday, people came together to raise more than $2.7 billion to support the causes they care about. This year, you can participate in #GivingTuesday by sharing a UNselfie, which tells the world why it’s important to give and support CCF.…
Read More‘Think tank’ of multidisciplinary experts develop proposals to leverage precision medicine in improving cholangiocarcinoma patient outcomes
Cholangiocarcinoma Foundation sponsored C2T2 in Las Vegas with funding from a generous donor Twenty-nine expert scientists and clinicians from the world’s leading academic institutions developed potentially transformative project proposals while gathered in Las Vegas for a two-day think tank meeting called, Cure Cholangiocarcinoma Think Tank (C2T2). A white paper summarizing the critical discussion themes and…
Read MoreMan runs a marathon each month in honor of his wife, who has been diagnosed with rare bile duct cancer twice
Delorean Ostrom’s ‘Racing for Hope’ campaign raises funds to advance cholangiocarcinoma research with proceeds benefiting the Cholangiocarcinoma Foundation SALT LAKE CITY, UT – Delorean Ostrom of Suwanee, GA, and his family’s life changed when his wife, Mandy, was diagnosed with a rare bile duct cancer called cholangiocarcinoma. To pay tribute to her, Ostrom is running…
Read MoreNew standard of care for rare cancer with FDA approval of Imfinzi applauded by Cholangiocarcinoma Foundation
AstraZeneca TOPAZ-1 Phase III trial showed adding immunotherapy to standard chemotherapy increases overall survival in advanced biliary tract cancer The Cholangiocarcinoma Foundation (CCF) applauds the U.S. Food and Drug Administration (FDA) approval of AstraZeneca’s Imfinzi (durvalumab). The TOPAZ-1 Phase III trial showed that durvalumab in combination with standard-of-care chemotherapy resulted in improved overall survival (OS)…
Read More2022 University of Chicago Regional Symposium
2022 University of Chicago Regional Symposium Join us for a day dedicated to the science of cholangiocarcinoma. The symposium includes presentations from University of Chicago clinicians in the field of cholangiocarcinoma. Speakers present highlights from the latest clinical findings, including systemic, IR, and transplant, followed by panel discussions that engage the audience in Q&A. Dr.…
Read More3rd Annual Moving for the Cure Recap
Thank you to everyone who helped make TeamCCF’s 3rd Annual Moving for the Cure (M4C) a success! Each M4C participant elected to complete any athletic activity of their choosing—such as running, biking, hiking, swimming, yoga, dancing, and more—during the week of July 24-30, 2022. The goal of M4C is to encourage the cholangiocarcinoma community to…
Read MoreTrials, Targeted Agents Often Lead to Financial Toxicity From CCA
Clinical trials and targeted agents do not appear to affect health care–related quality of life, however. July 27, 2022 — People with cholangiocarcinoma (CCA) who enroll in a clinical trial or receive targeted therapy suffer a significant financial burden, but their health care–related quality of life (QOL) is unaffected, according to a new report published in Journal of…
Read MoreGovernor’s Signature Brings Awareness to Rare Cancer
COLUMBUS – Ohio Governor Mike DeWine signed into law this morning House Bill 537, legislation sponsored by State Representative Cindy Abrams (R-Harrison) to designate February 12 as Cholangiocarcinoma (pronounced koh-LAN-jee-oh-KAR-sih-NOH-muh) Awareness Day. “I’m proud to sponsor this important legislation. With more awareness, we hope to give patients and medical providers the foresight to catch this…
Read MoreGlobal patient registry to expand cholangiocarcinoma knowledge worldwide offered by Cholangiocarcinoma Foundation in partnership with Invitae
Global patient registry to expand cholangiocarcinoma knowledge worldwide offered by Cholangiocarcinoma Foundation in partnership with Invitae The Cholangiocarcinoma Foundation (CCF) in partnership with Invitae has updated its global patient registry, offering a unique international data pool for cholangiocarcinoma (bile duct cancer) history and treatment worldwide. The updated International Cholangiocarcinoma Patient Registry (ICPR) is designed to…
Read MoreHappy Retirement to Donna Mayer
The Cholangiocarcinoma Foundation announces the retirement of Donna Mayer. Donna worked tirelessly to help build CCF into a trusted, global source of cholangiocarcinoma information and resources. Her work on the CCF annual conference and research fellowship programs was exceptional and helped to extend the work of CCF across the globe. For nearly a decade, Donna led programs and developed policies that increased awareness about…
Read MoreBill recognizing Cholangiocarcinoma Awareness Day clears Ohio Senate, heads to governor
Rep. Cindy Abrams (R-Harrison) The Cholangiocarcinoma Foundation congratulates Rep. Cindy Abrams (R-Harrison) and the Ohio legislature for the passage of House Bill 537. The legislation sponsored by Abrams designating February 12 as Cholangiocarcinoma Awareness Day unanimously passed the House Health Committee, Senate Health Committee and the Ohio House. On Wednesday, the bill was also favorably…
Read MoreInnovative ‘think tank’ comprised of cholangiocarcinoma experts to meet to develop concrete project ideas to advance the field
Twenty-nine expert scientists and clinicians from the world’s leading academic institutions are convening in Las Vegas for the first time in a three-day meeting, Cure Cholangiocarcinoma Think Tank (C2T2). The working meeting, May 12-14, was made possible through generous donations to the Cholangiocarcinoma Foundation, the premier global resource in research, education, and public awareness of…
Read MoreEnjoy any activity, anywhere, and raise money to help fund a cure for cholangiocarcinoma, a rare cancer of the bile ducts
SALT LAKE CITY, UT – TeamCCF is inviting athletes who want to fundraise for the Cholangiocarcinoma Foundation to do so in a fun and positive way. Moving for the Cure takes place July 24-30, 2022, and involves participants of all ages, and any athletic ability, raising money through a fitness event of their choosing. Participants…
Read More60-year-old St. Louis man trains to swim the English Channel to honor his late wife who died from cholangiocarcinoma
Jonathan Whiting raises rare bile duct cancer awareness with ‘21 Miles of Hope’ fundraising campaign to benefit the Cholangiocarcinoma Foundation For nearly two years, Jonathan Whiting has been training to swim the English Channel in honor of his late wife, Lori Whiting, and to raise awareness and funds for the Cholangiocarcinoma Foundation. The rare bile…
Read More$550,000 in research grants awarded by the Cholangiocarcinoma Foundation to fund early-career investigators at renowned institutions
Research grants were made to Amsterdam University Medical Center, Duke University, Icahn School of Medicine at Mount Sinai, Johns Hopkins University School of Medicine, Khon Kaen University Thailand, Massachusetts General Hospital Cancer Center/ Harvard Medical School (2), National Institutes of Health, Regents of the University of Minnesota, University of Michigan, and UPMC Montefiore The Cholangiocarcinoma…
Read More2nd Annual Cholangiocarcinoma Foundation Poster Abstract Awards
3 winners awarded for making significant contributions in research for rare cancer known as cholangiocarcinoma The Cholangiocarcinoma Foundation announced the 2022 Poster Abstract Awards at its annual conference that took place virtually and in-person in downtown Salt Lake City. The award winners were honored for making significant contributions with a visual overview of cholangiocarcinoma research…
Read More2022 Mark R. Clements Award goes to Jan Meyer, George Riddle and Dr. Mitesh Borad at 9th Annual Cholangiocarcinoma Foundation Conference
Award winners are honored for making significant contributions towards finding a cure for cholangiocarcinoma through advocacy, vision, innovation, collaboration. The Cholangiocarcinoma Foundation announced its 2022 Mark R. Clements Award honorees at its annual conference in Salt Lake City, Utah. The award winners were honored for making significant contributions in supporting patients and rendering cholangiocarcinoma a…
Read MoreInitiative to Map the Cholangiocarcinoma (CCA) Landscape in Europe Will Help Improve Patient Outcomes
Scientists advocate for education programs to raise awareness and improve early diagnosis, survival, and quality of life of CCA patients in the largest and most complete multicenter study of CCA, published in the Journal of Hepatology Bile duct cancer, also known as cholangiocarcinoma (CCA), is a rare cancer often diagnosed only at an advanced stage.…
Read More9th Annual Cholangiocarcinoma Foundation Conference features expert speakers, 40 poster presentations from around the world
The 9th Annual Cholangiocarcinoma Foundation Conference begins on Wednesday, Feb. 23rd, and takes place at the Salt Palace Convention Center. The three-day conference is presented by the nonprofit Cholangiocarcinoma Foundation and is also offered virtually. Attendees and presenters from around the world represent healthcare, industry, advocacy organizations, patients, caregivers, academia and regulatory bodies. Registration is…
Read MoreCholangiocarcinoma Foundation congratulates AstraZeneca TOPAZ-1, the first Phase III trial to show adding immunotherapy to standard chemotherapy can increase overall survival in advanced biliary tract cancer
On behalf of patients and families impacted by cholangiocarcinoma (bile duct cancer), the Cholangiocarcinoma Foundation congratulates AstraZeneca and its positive results from the TOPAZ-1 Phase III trial. The trial showed Imfinzi (durvalumab) in combination with standard-of-care chemotherapy resulted in improved overall survival (OS) versus placebo plus chemotherapy in patients with advanced biliary tract cancer (BTC).…
Read MoreFive for Friday – 5 takeaways from GI ASCO 2022
GI ASCO is a global symposium that delivers the latest and most innovative science, research, and multidisciplinary educational content in the GI cancers field.
Read MoreVolunteers make big strides with raising awareness, funding research for the Cholangiocarcinoma Foundation
In 2021, volunteers for the Cholangiocarcinoma Foundation (Foundation) made big strides in raising awareness and funding research to render the lethal bile duct cancer treatable. Supporting and managing the volunteers was recently recognized by the Utah Nonprofit Association that awarded the Foundation with its credential badge for volunteer management. “We see this achievement as the…
Read More15th Anniversary of Cholangiocarcinoma Foundation commemorated for #GivingTuesday with a $50,000 match from a donor
The Cholangiocarcinoma Foundation has been celebrating its 15th anniversary throughout 2021 and is continuing to observe the milestone by participating in #GivingTuesday. The global giving movement began in 2013 and is the world’s largest generosity movement. It is also considered by many as the opening day of the giving season. The generosity of donors to…
Read MoreGiving Tuesday 2021
This year was an incredible success, because of you, we raised more than $150,000! Last year on Giving Tuesday, people came together to raise more than $2.5 billion to support the causes they care about. This year, you can participate in #GivingTuesday by sharing a UNselfie, which tells the world why it’s important to give…
Read MoreVietnam veterans with cholangiocarcinoma get help filing claims with the VA in commemoration of Veterans Day
Navigating how to file claims with Veterans Affairs can be daunting when diagnosed with a rare disease such as cholangiocarcinoma (bile duct cancer).
Read More2 Men, 1 mission: Run marathons to honor their wives and raise funds to benefit the Cholangiocarcinoma Foundation
Delorean Ostrom of Suwanee, GA, and Tom O’Meara of Pearl River, NY, have something in common that they wish they didn’t. Their wives both have rare bile duct cancer called cholangiocarcinoma.
Read MoreLong-Term Survivor Stories – Christy Landon
My name is Christy Landon. I grew up in the northeast Ohio area and currently live in Mansfield with my husband, Troy. We have four adult children: Conner, Alexis, Logan, and Alec. They are all attending college. I also have three grandchildren. MY STORY Prior to diagnosis, I was a family and consumer sciences teacher…
Read MoreLong-Term Survivor Stories – Bekki Slater
Hello. My name is Bekki. I am a 40-year-old mother of two children, Grace, 9, and Connor, 7. I am incredibly lucky to be married to my best friend and love of my life, Jason, who is the pillar of our family. We live on the Central Coast of California (between Los Angeles and San…
Read MoreGCA Webinar: Why better coding is needed
There is currently a lack of cholangiocarcinoma-specific educational resources that are designed to support the adoption of ICD-11 among healthcare professionals. As a result, the Global Cholangiocarcinoma Alliance (GCA) is organizing an ICD-11 webinar titled “An overview of CCA: Why better coding is needed.”
Read MoreFive for Friday – 5 Things You Can Do to Participate in Awareness Month
Visual displays during Cholangiocarcinoma Awareness Month and sharing information about the causes, symptoms, and risk factors for cancer on social media can help save lives.
Read MoreWebinar: Precision Medicine in Cholangiocarcinoma: How Comprehensive Molecular Profiling Identifies Personalized Treatment Options for Patients
Between 2018 and 2021, several targeted drug therapies achieved FDA approval for use in cholangiocarcinoma based on specific gene alterations identifiable by next-generation sequencing.
Read MoreFive for Friday – 5 items you can purchase to help support CCF’s anniversary
Home / Blog / Five for Friday – 5 items you can purchase to help support CCF’s anniversary On Jan. 21, 2021, CCF introduced a year-long celebration of its 15th Anniversary. The CCF Awareness Store recently added new 15th anniversary items. Here are five (5) items you can purchase to help support the anniversary and…
Read More2 New mentorship programs via partnership with ICRN/ENS-CCA to support, advise junior researchers in their career choices
The Foundation’s International Cholangiocarcinoma Research Network (ICRN) and the European Cholangiocarcinoma Network (ENS-CCA) created two new mentoring programs…
Read MoreFive for Friday – 5 ways you can participate in the Turkey Trot
CCF and TeamCCF are thrilled to announce our Second Annual virtual Turkey Trot. This Thanksgiving we want you to move for a good cause.
Read MoreFive for Friday – 5 on one-of-a-kind items in the CCF Bidding for the Cure Auction
Thank you to everyone who has supported CCF Bidding for the Cure. We wanted to remind you that the virtual auction is still open until tomorrow, Oct. 2nd at 9:00 p.m. (ET).
Read MoreRare Cancer Day is supported by Cholangiocarcinoma Foundation with video series called ‘Patient Voices’
Any cancer diagnosis is frightening but when it is rare cancer with few treatment options, the diagnosis can be especially devastating.
Read MoreFive for Friday – 5 ways you can support CCF Bidding for the Cure
The inaugural CCF Bidding for the Cure virtual auction starts TODAY, Sept. 24th, at 3:00 p.m. (ET).
Read MoreRare cancer funding is being raised by Ruth Stage, Inc. to benefit the Cholangiocarcinoma Foundation
Helping to raise funds for a grossly underfunded disease is something you rarely see from a theater company. Yet, that is exactly what Ruth Stage, Inc…
Read MoreEarly-stage cancer research funding supported by inaugural virtual auction by Cholangiocarcinoma Foundation
Cholangiocarcinoma patients and scientists need help generating funding for research and treatment of early-stage cholangiocarcinoma, a rare but lethal bile duct cancer. To help in that effort…
Read MoreWebinar: Personalizing cancer treatments with the PARIS® Test for cholangiocarcinoma patients
Subscribe to our YouTube Channel Title: Personalizing cancer treatments with the PARIS® Test for cholangiocarcinoma patients Recorded: Thurs., Sept. 23, 2021 4:00pm (Eastern) Presented by: SEngine Rare and aggressive cancers, such as Biliary Tract Cancers (BTCs), have a significant unmet need that current approved therapeutics do not meet. Conventional clinical trial-based approaches have been ineffective…
Read MoreFive for Friday – 5 Ways to Support the Newly Diagnosed Program
CCF officially launched its Newly Diagnosed/New to CCF program on Monday, Sept. 13th, to support patients and caregivers following a cholangiocarcinoma diagnosis.
Read MoreNew cancer program launched by Cholangiocarcinoma Foundation to connect patients, caregivers with essential resources
The Cholangiocarcinoma Foundation (CCF) is proud to announce the launch of its Newly Diagnosed/New to CCF program to support patients and caregivers following a cholangiocarcinoma (bile duct cancer) diagnosis.
Read MoreRare cancer diagnosis for WTC responders, survivors 20 years later
The terrorist attacks on Sept. 11, 2001, that led to the destruction of the World Trade Center and the loss of thousands of lives was an environmental disaster with long-lasting consequences. The dust and toxins that dispersed into the air and covered lower Manhattan set into motion a health crisis that will only accelerate in…
Read MoreFive for Friday – 5 Videos from CCF Research Advocates
These volunteers spend countless hours reviewing patient materials, giving feedback on clinical trial design, and sharing their knowledge to help advance the science and better the lives of cholangiocarcinoma patients.
Read More3rd Annual A Hike for Jill. A Hike for a Cure
In memory of his wife, Jill, Kevin Coyle hosted the 3rd annual “A Hike for Jill. A Hike for a Cure.”
Read MoreFive for Friday – 5 CCF Collaborations with Industry
Partnership and collaboration are vital to our mission to find a cure and improve the quality of life for those affected by cholangiocarcinoma.
Read MoreCholangiocarcinoma Foundation CEO named as a finalist in Cancer Community (C2) Awards
Cholangiocarcinoma Foundation CEO and Founder Stacie C. Lindsey has been named a finalist of the Cancer Community (C2) Awards in the category of C2 Catalyst Change.
Read MoreFive for Friday – 5 CholangioConnect Updates
The Foundation recently celebrated its 500th mentor/mentee relationship with the CholangioConnect program. This week we are sharing a more in-depth look into the CholangioConnect Program.
Read MoreCholangioConnect Update – Patty Maxin
Just shy of the fourth anniversary of CholangioConnect, there was a celebratory enthusiasm as the administrative entry registered its 500th connection through the Foundation’s mentoring platform.
Read MoreCholangiocarcinoma Foundation commends FDA approval of new therapy for cholangiocarcinoma patients
CCF provided patient insights into Servier’s development of TIBSOVO® as a treatment for individuals with IDH1-mutated cholangiocarcinoma.
Read MoreCholangioConnect Mentee Testimonials – Jessica Thomas
CholangioConnect was my mooring in a hurricane. Life seemed impossibly full of information and emotions, and I was so grateful for my mentor.
Read MoreShaun Hope: ‘It Could Be Worse’
Shaun Hope was diagnosed with extrahepatic cholangiocarcinoma in August 2019. He faced his diagnosis with courage and his famous mantra, “It could be worse.” Shaun was a geek at heart. Even while struggling with fatigue and pain, he worked as long as he was able to. He built an arcade, purchased a 3-D printer to…
Read MoreCholangioConnect Mentee Testimonials – Rob Howard
Within hours of my dad’s cholangiocarcinoma diagnosis, I was online doing research trying to learn about this type of cancer. I soon found my way to the comforting and informative website for the Cholangiocarcinoma Foundation.
Read MoreFive for Friday – 5 CCA Survivor Stories
In anticipation of our upcoming Newly Diagnosed program, we would like to recognize several friends of the Foundation who have been willing to share their survivor stories.
Read MoreTeam Sarah Newton
Sarah Newton of Galena, Illinois has been dealing with bile duct cancer since her diagnosis in July 2020. She has endured four-plus months of chemo, two procedures involving implanting Y90 in both lobes of her liver and is currently taking gene therapy medication.
Read MoreCholangiocarcinoma Foundation raises more than $76,000 in 2nd Annual Moving for the Cure
The Cholangiocarcinoma Foundation (CCF) and TeamCCF sponsored its second athletic event, Moving for the Cure. The virtual fundraiser invited participants from around the world, of any age, and of any physical ability to raise money through an athletic event of their choosing.
Read More2022 Annual Conference T-Shirt Design Contest!
CCF is excited to announce the 2022 Annual Conference t-shirt logo contest. CCF is now accepting logo proposals for t-shirts, which will be introduced for the Annual Conference.
Read MoreFive for Friday – 5 Clinical Trial Categories
A cholangiocarcinoma (CCA) diagnosis can be overwhelming when you have the burden of figuring out what treatment options are best for you.
Read MoreBidding for the Cure
Thanks to everyone that participated! Help fund research that will move us closer to a cure. To celebrate the Cholangiocarcinoma Foundation’s 15th Anniversary, and to support our volunteer committee’s pledge to raise $150,000 to fund critical research into cholangiocarcinoma, we are holding our first-ever virtual silent auction – Bidding for the Cure. We are auctioning…
Read MoreFive for Friday – 5 Webinars You Can Watch Online
Did you know that all educational webinars are recorded and added to CCF’s YouTube Channel?
Read MoreFive for Friday – 5 Ways You Can Support CholangioConnect
It’s time to celebrate! July 2021 marks the creation of the 500th mentor/mentee relationship with CholangioConnect since its beginning in July of 2017.
Read MoreWhispers Over My Shoulder
Excerpt from the ASCO Post, by Mairéad Geraldine McNamara, MB, PhD. When I interviewed for my current post as a first-time consultant in medical oncology in the United Kingdom, I was asked about my 5-year career plan. I remember some detail of my reply, but I don’t think it even remotely encompassed the depth of insight…
Read MoreFive for Friday – 5 Recent News Articles
Keeping you informed and educated about cholangiocarcinoma is a priority for us at the foundation.
Read MoreFive for Friday – 5 ways to get ‘Moving for the Cure’
Join CCF’s 2nd Annual Moving for the Cure! Enjoy any activity, anywhere, and raise money for the Foundation. All ages and athletic abilities can participate.
Read MoreFive for Friday – Five events that the cholangiocarcinoma community has put together
This week, we are featuring five (5) events that the cholangiocarcinoma community has put together to engage with others, be proactive in facilitating awareness, and raise money for the Cholangiocarcinoma Foundation.
Read MoreJourney of Hope: Day 42
On May 19th when Linda and I were flying to Salt Lake City to begin the Journey of Hope, I wrote a note to myself wondering what lay ahead for the next six weeks.
Read MoreJourney of Hope: Day 41
Well, here I am on the eve of the conclusion of my 15,000 mile Journey of Hope. I’ve checked off all the boxes of the milestones I originally set out to achieve. At least I thought I had…
Read MoreJourney of Hope: Day 40
Another milestone hit today: 48 states visited, and on schedule! 198 more miles to hit the commemorative 15,000 mark, and about 565 to the endpoint.
Read MoreJourney of Hope: Day 39
Leaving Barstow, CA, my first scheduled meet up was about 250 miles away in Paso Robles, CA.
Read MoreJourney of Hope: Day 38
I can now “check the box” for visits to towns named Hope, and also admit a blunder along the way.
Read MoreJourney of Hope: Day 37
It’s amazing what you can see and learn, on a single day, as part of a 40-day journey up, down, and across the country.
Read MoreFive for Friday – Five ways to get involved in the Journey of Hope
It is with extreme pleasure that we announce Dave Fleischer is near the end of his 15,000-mile Journey of Hope. On Wednesday, June 30th, he will make his way back to Utah and be greeted with a welcome back party at Ken Garff Honda Orem.
Read MoreJohn Blonder Memorial Ride
John and Jill Blonder were married for 34 years. They were preparing for retirement at their home in Dandridge, Tennessee when John discovered he had cholangiocarcinoma.
Read MoreJourney of Hope: Day 36
In my mind, today’s component of The Journey of Hope has to be marked as Close Encounters of the Third Kind.
Read MoreJourney of Hope: Day 35
This afternoon I had the opportunity to meet up with Tina Andera and Mindy Cooper (Warriors) at the Welcome Center in Cheyenne, WY.
Read MoreJourney of Hope: Day 34
“Toto, I have a feeling we’re not in Kansas anymore!” I had been waiting to say that through the first 41 states I visited. Now that I’m in NE., it’s officially stated!
Read MoreJourney of Hope: Day 33
A Tale of Two Cities: It’s interesting to see how different towns try to stay relevant and welcoming, especially when they are off an interstate highway.
Read MoreJourney of Hope: Day 32
Today, I made my way through two more towns named Hope; one in OH., and one in IN. I came to the realization that I’ve been in five small towns named Hope over the past four Sunday’s.
Read MoreJourney of Hope: Day 31
As I get into the last 5,000 miles of my Journey of Hope, I’m excited to see what lies ahead. This includes visits with warriors, caregivers, doctors, spontaneous encounters with the “unknowing”, and continuing to experience the vastness of our country.
Read MoreJourney of Hope: Day 30
Happy, Happy Valley! This is my second visit to Happy Valley in the past four weeks. The difference is the first time was in OR., and tonight I’m in PA; about 2,670 miles away.
Read MoreFive for Friday – 5 clinical trials presented at ASCO
The American Society of Clinical Oncology Gastrointestinal Cancers Symposium (GI ASCO) recognizes the important role clinical trials play in cancer advancements, especially GI cancers.
Read MoreJourney of Hope: Day 29
Headed east from Weston, WV, to Sparta, NJ, for a night of rest before starting the final 1/3 of my journey Friday afternoon. It was another beautiful day traveling through WV, western MD, PA, and back into NJ.
Read MoreJourney of Hope: Day 28
Have you ever thought about what the word obscure means? One definition is that it’s a state of being unknown, inconspicuous, or unimportant.
Read MoreJourney of Hope: Day 27
“Pushing a rock, pushing a rock”. As part of my journey I’m leaving a trail of Hope rocks that Linda painted across the country; in each of the 48 states, and in towns named Hope.
Read MoreJourney of Hope: Day 26
Tonight, I’d like to share two stories that continue to make my Journey of Hope one of the most meaningful experiences of my life.
Read MoreJourney of Hope: Day 25
Today was yet another eventful day on the Journey that went from A to Z; both literally and figuratively.
Read MoreJourney of Hope: Day 24
My scheduled visit today, was at the home of Heidi Garringer Rhea (warrior) in Mandeville, LA.
Read MoreJourney of Hope: Day 23
Anyone know where the tallest cast iron statue in the U.S. is located, and what its’ name is? As I approached my first meeting location of the day, in Birmingham, AL, I observed a significant statue on a pedestal on a high point in the city.
Read MoreFive for Friday – 5 Ways You Can Share Awareness
Cholangiocarcinoma Awareness Matters! This year nearly 10,000 people in the United States and many more across the world will be diagnosed with CCA, many in a late stage.
Read MoreJourney of Hope: Day 22
Have you ever had one of those days when you realize how finely tuned our lives are? That is until a few minor quirks get in the way. Today was one of those days for me.
Read MoreJourney of Hope: Day 21
As it’s the 15th anniversary of the Cholangiocarcinoma Foundation, many people now know that I’ve incorporated the number 15 into my journey in a variety of ways.
Read MoreJourney of Hope: Day 20
Another day of amazing moments, and a great way to mark the halfway point on the Journey, at least for # of states visited.
Read MoreJourney of Hope: Day 19
In driving terms, today’s schedule was a short one, as I was in the car for less than two hours.
Read MoreJourney of Hope: Day 18
To date, the Journey of Hope has been memorable in many ways that will be with me forever. Today, however, was a milestone event that rises to the top.
Read MoreJourney of Hope: Day 17
After a two-minute visit to the beach for a quick photo of the Atlantic Ocean, I left Ogunquit, ME @ 6:30 a.m., and headed two hours south to Holliston, MA, and the home of Kim Balkus.
Read MoreJourney of Hope: Day 16
Today was to be a day of rest, including a walk on the beach, here in Maine. Hah! Never happened.
Read MoreFive for Friday – 5 survivor stories
In anticipation of National Cancer Survivors Day on June 6th, we would like to recognize several friends of the foundation who have been willing to share their survivor stories.
Read MoreJourney of Hope: Day 15
I don’t want to jinx myself, however, the Journey just keeps getting more meaningful to me by the day! Now I’m starting to think how can it be possible that I only have 9,375 miles to go?!
Read MoreJourney of Hope: Day 14
Remember the movie Cast Away starring Tom Hanks and his companion Wilson, the soccer ball? Well, I had one of those episodes today, when Mike O’Langio my Mutations Matter photo bud seemed to have disappeared.
Read MoreJoin the Cholangiocarcinoma Foundation’s 2nd Annual Moving for the Cure!
TeamCCF would like to take this opportunity to engage those who want to fundraise for the Foundation in a fun and positive way with a fitness component.
Read MoreJourney of Hope: Day 13
What an inspiring day! My first stop this morning was in Akron, OH, where I was met by a “sea of green” at the home of Lisa (warrior and mentor) and David Craine.
Read MoreJourney of Hope: Day 12
I have to admit, this was a long day. As I planned the journey, I knew that was going to be the case, however, I didn’t plan on the hotel story at the end of the day.
Read MoreJourney of Hope: Day 11
Wow, another eventful day! The day started with me dropping Linda off at O’Hare Airport for her journey home to NJ, so as to be with our grandson, Austin, this week for “bus duty”.
Read MoreJourney of Hope: Day 10
It was a beautiful, cool, cloudless morning when Linda and I departed Rochester, MN, today. Our first official stop was about 275 miles away, fairly close to Milwaukee.
Read MoreJourney of Hope: Day 9
Departing from Watertown, SD, we headed in a southeasterly direction to Hope, MN., over a variety of roads, including interstates, two-lane state and county roads, plus an added bonus of dirt! It’s amazing what supposed shortcuts GPS will produce at times!
Read MoreCCF Celebrates FDA Approval of TRUSELTIQ™ for Cholangiocarcinoma Patients Developed by BridgeBio Pharma Affiliate QED Therapeutics
This is an important milestone for this community and specifically for patients with CCA harboring an FGFR2-fusion.
Read MoreFive for Friday – 5 social media platforms that you can follow us on
Our social media platforms allow us to tell your stories. Messages can help increase awareness, promote programs and initiatives and spread the word about our mission.
Read MoreJourney of Hope: Day 8
As we departed Dickinson, ND, this morning, we were greeted with a windy 35°, and snow showers! Quite a difference for those in New England talking about how hot it is at 90°. Driving east on I-94 our first stop was to see Salem Sue, the world’s largest Holstein cow!
Read MoreJourney of Hope: Day 7
We started our A.M. drive in Livingston, MT, and proceeded to Billings, MT. to pick up Melinda Bacchini, a CC Warrior who is also on the staff of the foundation. Melinda is Director of Patient Advocacy and an 11½ year survivor.
Read MoreJourney of Hope: Day 6
We saw a lot of gorgeous scenery today, including Sandpoint and Hope, ID, as well as East Hope, and believe it or not, an area known as Beyond Hope! The beauty continued into MT. with diverse scenery and weather conditions along MT Route 200 and I-90 eastbound before the pouring rain started in Anaconda, MT.
Read MoreJourney of Hope: Day 5
This morning, Linda and I had the opportunity for a meet-up outside the Fred Hutch Cancer Center in Seattle. Our mission was to thank doctors who are improving the lives and finding a cure, for cholangiocarcinoma patients, now and in the future.
Read MoreWebinar: Patient Centered Partnerships
Have you ever wondered about how CCF engages with Industry Partners? Join our webinar on May 27th to learn about the partnerships and collaboration we have with industry.
Read MoreJourney of Hope: Day 4
This morning Linda and I had the opportunity to meet in the Vancouver, WA area, with one of my ex-colleagues, his wife, and daughter, Sara. Two years ago, Sara was a recipient of the Sarah Fleischer Bennett memorial scholarship.
Read MoreJourney of Hope: Day 3
Day three of the JoH was another day full of fulfilling visits, beautiful scenery and variations in weather, including rain, heavy fog on the curvy roads of the Cascades, then sunshine.
Read MoreJourney of Hope: Day 2
Day two of our journey had Linda and I heading west from Twin Falls to Boise, ID for a scheduled meet up with Cindy Thomas of the Cholangiocarcinoma Foundation staff, and Steven Banks, a local cholangiocarcinoma warrior.
Read MoreFive for Friday – 5 events you might have missed
Each week we bring you the latest information and updates relevant to the CCF community through our live webinars and other events.
Read MoreJourney of Hope: Day 1
After a great send off from Ken Garff Honda, Orem, UT, Linda and I began our 15,000 mile journey. With the foundation celebrating its’ 15th anniversary, our first duty was to commence the drive on I-15 northbound.
Read MoreCheer Dave On!
May 20th was an exhilarating day for CCF. Friends, family, and other locals gathered together with signs and balloons as Dave Fleischer left on his 15,000 mile Journey of Hope in honor of their daughter Sarah.
Read MoreThe Second Annual Quack Out Cholangio 5K Run/Walk to Crush Bile Duct Cancer
The perfect race day weather in Delaware welcomed Cholangiocarcinoma Warriors, friends, and family from across the United
States.
Five for Friday – 5 ways you can get involved with the Journey of Hope
Dave and Linda Fleischer plan to spend 6 weeks driving across the United States on a 15,000 mile Journey of Hope in memory of their daughter, Sarah Bennett.
Read MoreLoving Parents Plan a 15,000 mile Journey of Hope in Memory of their Daughter
Dave and Linda Fleischer will Raise Awareness and Money for Research for Cholangiocarcinoma through a Road trip Across the United States.
Read MoreFive for Friday – 5 ways you can participate in Campaign for the Cure
Join a vibrant community of donors helping to find a cure for cholangiocarcinoma and improving the lives of patients and families.
Read MoreCCF Celebrates FDA’s Filing Acceptance and Priority Review of TIBSOVO® for the Treatment of IDH1-mutations in CCA
This is an important milestone for this community and specifically for patients with an IDH1 mutation.
Read More15,000 Mile Journey of Hope
I’m planning a 15,000 mile Journey of Hope; a road trip up, down and across the 48 contiguous United States.
Read MoreFive for Friday – 5 impacts of volunteers and ways to get involved
While April is set aside to focus gratitude for volunteers, we recognize and appreciate their contribution every day.
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