News

The Holiday Season is approaching us and will be here before we know it. This week we’d like to share 5 ways you can get involved with the CCF community and help make a difference.

Roz has always been very healthy and active, especially among us sibs, and the news of her having cholangio took us by storm. Being the first born, her “to do” list began to grow: schedule doctor appointments, research on how to fight this unknown disease…

The Cholangiocarcinoma Foundation’s Blog has been home to a variety of content ranging from patient perspectives to updates on medical advancements. Patients share news and personal anecdotes, and the blog also serves as a resource for you to familiarize themselves with the Foundation.

We are pleased to announce that the 8th Annual Cholangiocarcinoma Foundation Conference will be held virtually March 31st- April 2nd, 2021. John Bridgewater, MD, PhD of the UCL Cancer Institute, London and Funda Meric-Bernstram, MD of MD Anderson Cancer Center will Co-Chair the event.

We want to make sure you’re in the know. This week we’d like to share 5 exciting events that are happening soon. Be sure to add these events to your calendar and share them with your friends and family.

Mike Shane Memorial Fund (MSMF) just recently turned one! In the past year MSMF has helped 7 cholangiocarcinoma patients get a second opinion. All donations they receive go to second opinions.

As biliary tract cancer (BTC) patients typically survive less than one year on standard-of-care chemotherapy, adapting prognostic biomarkers to guide their management remains challenging.

Every contribution, regardless of size, makes a difference and is an investment in education, research, and advocacy to find a cure for cholangiocarcinoma.

Finding a cure is at the heart of all we do for our patients and clinical trials are essential to our mission. This week we’d like to share 5 resources that will help find the right clinical trial for you!

When I thought of the word rare I envisioned something precious, beautiful and exceptional, like an amazing piece of art in a museum; something that brought joy and smiles to people. I didn’t think of diseases until I was diagnosed with Stage IV Cholangiocarcinoma in 2010.

We cannot do this without your help! This week we’d like to share 5 ways YOU can get involved in Rare Cancer Day to help us spread awareness.

Don’t forget to mark your calendar for Rare Cancer Day, on September 30th. The Cholangiocarcinoma Foundation (CCF) partners with NORD every year to join together and raise awareness for rare cancers, specifically cholangiocarcinoma.

This week we’d like to share 5 resources that explain the benefits of nutrition while being treated for cancer.

On September 7th, 2020 the Cholangiocarcinoma Foundation (CCF) participated in Grateful Patient Day. Each year, Grateful Patient Day spotlights stories of gratitude for doctors, nurses, researchers, medicines and procedures that help patients.

Cancer doesn’t just change the life of the patient; it changes the life of a community. And that is what we are in Palmyra, Pennsylvania, a community. Coach Geoff Good, a father, husband and a friend, was diagnosed with Cholangiocarcinoma.

Being a caregiver is the role of a lifetime. I think most of us take on this role without any hesitation. This was true in my case. Alongside my dad and sister, I took on the role of being one of my mom’s caregiver’s after her cholangiocarcinoma diagnosis.

In preparation for Grateful Patient Day, we’d like to share 5 ways you can share your gratitude for those that have helped in your cholangiocarcinoma journey – whether it be doctors, nurses, researchers, therapists, or technicians.

Dr. Supriya Kumar “Shoop” Saha passed away on May 6, 2020 after battling the complications from a bone marrow transplant for the treatment of myelofibrosis. He was only 40 years old. He was one of the first recipients of a Cholangiocarcinoma Fellowship Award.

We should, I thought, be compatriots: brothers-in-arms who’d lost their loved-one to an unfair, unlikely illness. What were chances that I’d come from South Africa to Italy only to stumble across someone who’d lost her husband to the same rare cancer my son succumbed to? I was even more astonished to discover we’d shared the same oncology team.

During our 2020 Annual conference, Incyte shared the results from a 700 patient survey. The survey found that the quality of life for patients with cholangiocarcinoma is heavily impacted by a host of symptoms and side effects, including depression that may be severe.

This week we’d like to offer 5 reliable resources to help navigate through depression.

We have some amazing events planned in the future that you’re going to want to be a part of. Whatever your personality or interest there is something for you.

This week we are sharing 5 upcoming events that you’ll want to add to your calendar.

Cholangiocarcinoma Foundation (CCF) is a proud member of The Working Consistent Group. Together with 41 other advocacy organizations, we committed to clarifying and promoting consistent use of common terms for biomarker and germline genetic testing.

We are SO thankful for all of our volunteers who work tirelessly to support CCF in any way they can. “One of the greatest gifts you can give is your time.” This week we would like to highlight 5 events that our amazing volunteers put together.

Each week, we’re going to offer five tips that will help you stay educated, informed and hopeful about all things cholangiocarcinoma.

Our 2020 Annual Conference was unforgettable! We would like to extend our sincerest thanks to all those who joined us online during the 2020 Virtual Annual Conference. Over 1,600 individuals from 49 states and 44 countries registered, which is 3x more than our previous conference!

During the conference, we presented exciting new research collaborations, programs, and more crucial information that will continue to move us toward better treatment options for patients.

If you missed it, we’d like to share 5 highlights from the conference.

Each week, we’re going to offer five tips that will help you stay educated, informed and hopeful about all things cholangiocarcinoma.

CCF’s Annual Conference has gone virtual, that means EVERYONE can attend!

In preparation, we’d like to share 5 things to do before the conference.

Improved Communication Is Vital Between Patients and Providers About Testing Needs WASHINGTON, DC (July 7, 2020) — A LUNGevity Foundation-led consortium of 41 leading patient advocacy organizations, professional societies and industry partners has published a white paper detailing recommendations for the use of testing terminology in precision medicine for patient education throughout the cancer community.…

Please join us this Thursday, July 9 for two events with our partners at Ciitizen! As part of the CCF Webinar Series, we will start with an educational webinar with Ciitizen’s Chief Regulatory Officer, Deven McGraw, focused on patient health data rights and privacy, and we will follow the webinar with a virtual onboarding event for anyone who…

Each week, we’re going to offer five tips that will help you stay educated, informed and hopeful about all things cholangiocarcinoma.

CCF’s Annual Conference has gone virtual, that means EVERYONE can attend!

In preparation, we’d like to share 5 things to do before the conference.

July is here, and the 2020 Cholangiocarcinoma Foundation’s Virtual Conference is just weeks away. CCF plans on having some fun during the conference! We’re excited to announce our first Lip Sync Battle. The winning song is “Fight Song” by Rachel Platten. Now it’s time for the fun to begin! Start planning your lip sync performances…

Each week, we’re going to offer five tips that will help you stay educated, informed and hopeful about all things cholangiocarcinoma.

CCF’s Annual Conference has gone virtual, that means EVERYONE can attend!

This week we present 5 ways you can win prizes at this year’s Annual Conference.

Dear Friends, With the tragic deaths of George Floyd, Breonna Taylor, Ahmaud Arbery and many others over the years and the confluence of recent events, important conversations are happening throughout the nation, including at CCF. We know there is work to do, within every organization and throughout the nation, for us to come together in…

Diagnosed with stage IV cholangiocarcinoma, I enrolled in a study investigating tumor-infiltrating lymphocyte therapy. That was 10 years ago.

“Volunteers do not necessarily have the time, they have the heart.”  Today CCF celebrates what volunteers do year-round. To our volunteers, you truly make an incredible difference in the work, and we thank you! Happy Volunteer Appreciation Week. Subscribe to our YouTube Channel Happy Volunteer Appreciation Week. You can join us in thanking our volunteers…

FDA Approves Incyte’s Pemazyre™ (pemigatinib) as First Targeted Treatment for Adults with Previously Treated, Unresectable Locally Advanced or Metastatic Cholangiocarcinoma WILMINGTON, Del.–(BUSINESS WIRE)–Apr. 17, 2020– Incyte (Nasdaq:INCY) today announced that the U.S. Food and Drug Administration (FDA) has approved Pemazyre™ (pemigatinib), a kinase inhibitor indicated for the treatment of adults with previously treated, unresectable locally advanced or metastatic cholangiocarcinoma…

Around 9 o’clock on a Saturday night in January 2017, I heard weird noises in the bathroom. I opened the door to find my son curled over the toilet. “It’s only cranberry juice. It’s only cranberry juice,” he muttered into the bowl. I took a glance- that wasn’t cranberry juice. I can hardly believe it…

Today CCF celebrates what volunteers do year-round. To our volunteers, you truly make an incredible difference in the work, and we thank you! Happy Volunteer Appreciation Month!

TeamCCF began in 2016 as a way to raise money through athletic events for the Cholangiocarcinoma Foundation. Since its inception, TeamCCF has participated in the Bank of America Chicago Marathon; the TCS New York City Marathon; The Berkeley Half Marathon;  the AACR Philadelphia Marathon, Half Marathon and 8k; The CNO Financial Group Indianapolis Monumental Marathon,…

TeamCCF began in 2016 as a way to raise money through athletic events for the Cholangiocarcinoma Foundation. Since its inception, TeamCCF has participated in the Bank of America Chicago Marathon; the TCS New York City Marathon; The Berkeley Half Marathon;  the AACR Philadelphia Marathon, Half Marathon and 8k; The CNO Financial Group Indianapolis Monumental Marathon,…

We wanted to share an exciting new program that our friends at Stand Up To Cancer (SU2C) recently launched. The SU2C Canada Kate McGarrigle Fund Music As Healing Grant Program is an initiative that encourages songwriter cancer patients and survivors to share their cancer journey through original music compositions. Applications for the program are open…

My story begins back in 2005. I was pregnant with my oldest son Dylan and had a very normal pregnancy. He was born on March 12th-nine days late. I ended up having a C-section. I think if Dylan had his way, he would have stayed inside – lol. A few weeks after his birth I…

February 12th, 2020 – Six charities from around the world have joined together to celebrate World Cholangiocarcinoma Day. Cholangiocarcinoma, a highly lethal cancer with poor prognosis, arises from the bile ducts in the liver. It is often diagnosed at advanced stages when treatment is only minimally effective, emphasizing the imminent need for novel therapies. There…

“A big reason for our donation is the love we have for Stacie and everything she has done for the Cholangiocarcinoma Foundation (CCF) and the patient community. For years, we have watched our family’s involvement with CCF and now that we are in a position to help, we are trying to make the biggest impact…

The Cholangiocarcinoma Foundation is pleased to announce its 7th Annual International Conference scheduled for April 1-3, 2020 in Salt Lake City. Because patients living with cholangiocarcinoma have a direct stake in their own medical care and are in a unique position to provide input, CCF has expanded its Annual Conference to include programming that addresses…

An unspeakable loss has affected the cholangiocarcinoma world on Friday, January 10, 2020. Melinda Bachini, our beloved patient advocate, tragically lost her son, Skylar Evan Kiefer, during the second decade of his life. In typical Melinda fashion, even in the darkest hours, her focus was to ensure that Skylar’s organs would benefit others. Friends in…

Is the secret to combating a “silent killer” hiding in our health data? That’s what we have been teaming with Komodo Health to find out. Intrahepatic Cholangiocarcinoma, or ICCA, is the second most common primary liver cancer in the world. Because its early symptoms often go unnoticed or can be attributed to other ailments, diagnosis…

Join us for an afternoon dedicated to the science of cholangiocarcinoma. The symposium will include presentations from area clinicians highlighting their work in cholangiocarcinoma. You will also hear the patient perspective of cholangiocarcinoma. There will be a break with complimentary snacks and beverages. The day will end with a panel discussion and Q&A around the…

By joining our CCF Patient Registry, your un-identified health information will provide important data to researchers to better understand cholangiocarcinoma and help develop new treatment options. To assist you with gathering your health information, CCF has partnered with Ciitizen to help our patients, at no cost to you, collect your health data, and should you choose, share it back with…

Now it begins. Thanksgiving. Giving Thanks. Food, Family, Friends, Fun. Turkey, Traditions, Touchdowns, Travel. Tension?! I remember a little of what I think I learned about the “First Thanksgiving” as a child. The Pilgrims came from England on a ship. “If April showers bring May flowers, what do May flowers bring? PILGRIMS – Bazooka Joe”. …

“Giving is not just about making a donation. It is about making a difference.” Last year on Giving Tuesday, people came together on Facebook to raise over $125 million to support the causes they care about. Building on this incredible momentum, and to further amplify that generosity, this year on December 3rd, starting at 8:00…

About a month ago my dad got a Facebook message from Carlos, a good friend living in Guatemala. He mentioned that he was coming to the United States with his family soon and was asking about places he should visit in Utah. My dad recommended Zion National Park, Arches National Park and a few other…

The Mike Shane Memorial Fund helps reduce financial barriers for patients who need a second opinion on their initial diagnosis of cholangiocarcinoma*. Purview, a global healthcare technology company, created this fund in memory of Mike Shane, a longtime friend and supporter who passed away on April 28, 2019, after a year-long battle with cholangiocarcinoma. Mike…

CCF sponsored a half-day symposium at the University of Chicago last week.  Here are some notes and impressions.  It’s not complete, and perhaps I got some of it wrong.  I’d appreciate comments and corrections. Stacie Lindsey outlined the history and mission of CCF.  I can’t help but feel that her work and that of her…

Written by Stephanie Zinis In May of 2018 our families’ lives were forever changed. A routine doctor visit led to an accidental discovery that my mom, Renee, had cholangiocarcinoma, a rare cancer affecting fewer than 40,000 per year. After my mom’s diagnosis we began researching and preparing for the future ahead. We came across many…

In a segment from this NBC’s Today Show, Karen Peterson discusses her experience with breast cancer. She has been an advocate for herself and others since her diagnosis. She talks about her genomic testing, being informed about her treatment options, as well as the importance of advocating for herself.  

October 1 is Rare Cancer Day as proclaimed by the National Organization for Rare Disorders (NORD). The NORD website ​shares the goal is “To shine a light on the rare cancer community, a group of individuals who are often overlooked in the broader cancer community.” The President and Founder of the Cholangiocarcinoma Foundation (CCF) Stacie…

Charles Graeber, The Breakthrough: Immunotherapy and the Race to Cure Cancer, Twelve, 2018. “Cancer kills millions of people every year and is one of humanity’s greatest health challenges. By stimulating the inherent ability of our immune system to attack tumor cells James Allison and Tasuku Honjo have established an entirely new principle for cancer therapy.…

“Cholangiocarcinoma sucks, it’s a tough, tough cancer.  Being difficult to diagnose, often diagnosed in later stages, and having limited treatment options, we knew we wanted to see how we could maybe help change that for future CCA patients” explained Jan Meyer, a current cholangiocarcinoma (CCA) patient. Recently, the Cholangiocarcinoma Foundation had the opportunity to interview Jan…

Join us for an afternoon dedicated to the science of cholangiocarcinoma. The symposium will include presentations from the University of Chicago’s hepatobiliary team highlighting their work in cholangiocarcinoma. You will also hear the patient perspective of cholangiocarcinoma. There will be a break with complimentary snacks and beverages. The day will end with a panel discussion…

FDA grants approval to Merk & Co. for Keytruda (pembrolizumab) “The hope is that advanced genetic information will one day be able to identify which patients are most likely to benefit from a specific treatment.” — Marion Schwartz SALT LAKE CITY, UTAH, USA, June 14, 2017 /EINPresswire.com/ — The U.S. Food and Drug Administration has…

ArQule, ASLAN Pharmaceuticals, Delcath Systems, Inc, InnoPharmax and Leap Therapeutics to Present Clinical Trial Concepts to International Research Network Truly, the best GI cancer meeting where the best science, most collaboration and meeting of the minds occurs year after year.” — Renuka Iyer, MD Roswell Park Cancer Institute SALT LAKE CITY, UTAH, UNITED STATES, January…

Cholangiocarcinoma Foundation Sees Great Promise in New Research Lab [SALT LAKE CITY, Utah (November 9, 2016) With the opening of the Saha Laboratory for Liver Cancer Translational Research, a giant step forward has been made in the study of cholangiocarcinoma, a highly lethal malignancy of the liver bile ducts. Supryia Saha, MD PhD, has joined…

FROM OUR PRESIDENT This issue of the newsletter marks an exciting milestone for the Cholangiocarcinoma Foundation (CCF), as we are celebrating our tenth anniversary. As I think over the last 10 years, I can hardly believe where we started and where we are now. We’ve grown from a small group of concerned volunteers to a…

National Cancer MoonShot 2020 New Hope for Rare Cancers Before July of 1969, our nation thought that landing on the moon would be an impossible feat, only imaginable in our wildest dreams. When Neil Armstrong and Buzz Aldrin walked on the moon, the word “impossible” was shattered when Armstrong said, “That’s one small step for…

My name is Kris and my journey began in Feb. 2011 when my back started hurting. The band of pain from my back to my chest was excruciating. I was vomiting from the pain. It eventually lessened a bit. I didn’t want to go to the hospital. On Monday, I went to see my Dr. and was sent for an ultrasound. It was just gallstones. Wrong! After a CT scan we knew…

Sarah Pieh was born in Adrian, Michigan on New Year’s Eve 1976. From a young age Sarah had a distinctive love of reading, traveling, and exploring new things. After graduating Cum Laude from Northwestern University in 1999, Sarah worked in Chicago for McMaster-Carr Industrial Supply before moving to Hawaii in 2001. There she met her…

“Collective Wisdom” is the theme for this year’s ASCO’s Annual Meeting in Chicago. Our attending team includes Melinda, Barbara, Jason, Andie, Kathi, Donna, Stacie and Marion.  Melinda and Barbara staffed the exhibit while the rest of our team were dispersed throughout the conference halls attending sessions or connecting with the various biopharma industry, researchers, physicians and advocates. In…