News
Five for Friday – Benefits of Volunteering
Each week, we’re going to offer five ways you can fight COVID-19, overcome the fear of the unknown and deal with the uncertainty of this situation.
This week, 5 Benefits from Volunteering.
Read MoreHigh-Five for Volunteers
“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…
Read MoreFDA Approves Pemigatinib for Advanced Cholangiocarcinoma
FDA Approves Incyte’s Pemazyre™ (pemigatinib) as First Targeted Treatment for Adults with Previously Treated, Unresectable Locally Advanced or Metastatic Cholangiocarcinoma April 18, 2020 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…
Read MoreFive for Friday – Healthy Daily Practices
Each week, we’re going to offer five ways you can fight COVID-19, overcome the fear of the unknown and deal with the uncertainty of this situation.
This week, 5 Ways to Maintain a Healthy Mind.
Read MoreCOVID-19 Financial Resources for People with Cancer
Our friends at cancer.net have put together a list of national/general COVID-19 financial assistance resources.
Read MoreFive for Friday – Maintain a Healthy Mind
Each week, we’re going to offer five ways you can fight COVID-19, overcome the fear of the unknown and deal with the uncertainty of this situation.
This week, 5 Ways to Maintain a Healthy Mind.
Read MoreThe Beginning
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…
Read More#stopthespread
Our friends at D2 Creative and Mill Pond Communications answered the #UNOpenBrief to help #STOPTHESPREAD of #COVID19. Their answer: an ILLUMINATION to help reduce face touching in the form of a playful 30-second PSA.
Read MoreCDC Guidelines for Cloth Face Coverings
CDC recommends wearing cloth face coverings in public settings where other social distancing measures are difficult to maintain (e.g., grocery stores and pharmacies), especially in areas of significant community-based transmission.
Read MoreFive for Friday – Fight Misinformation
Each week, we’re going to offer five ways you can fight COVID-19, overcome the fear of the unknown and deal with the uncertainty of this situation.
This week, 5 Ways to Fight Misinformation.
Read MoreVolunteer Appreciation Month!
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!
Read MoreLive Webinar: Navigating Your Care in Uncertain Times
During these unprecedented times Dr. Javle and Dr. Kelley will answer your questions to help address the specific care, treatment, and access needs of our community during the COVID-19 pandemic.
Read MoreCoronavirus: What People with Cancer Should Know
Some types of cancer and treatments such as chemotherapy can weaken your immune system and may increase your risk of any infection, including with SARS-CoV-2, the virus that causes COVID-19.
Read MoreThree Tips for Reluctant Superheroes
None of us wanted it, Cholangiocarcinoma has thrust us, kicking and screaming into the role of potential superheroes. Let me explain… These are tough times as the world locks down. I’m sure many of you have already seen posts or heard from friends how they are struggling with the anxiety of not knowing what is…
Read MoreFive for Friday – Do the Five!
Each week, we’re going to offer five ways you can fight COVID-19, overcome the fear of the unknown and deal with the uncertainty of this situation.
This week, DO THE FIVE to help stop the disease.
Read MoreMayo Clinic COVID-19 Q&A Podcast
The information about the COVID-19 pandemic changes rapidly, and it’s hard to stay up to date with the latest information. On this Mayo Clinic Q&A podcast, Dr. Gregory Poland, answers COVID-19 questions.
Read MoreThe One-Two Punch: Cancer And Coronavirus
You have cancer. Your treatment is difficult, laborious, expensive, and stressful- even on even the best of days.
Enter, coronavirus. What now?
Read MoreWe’re here for you
In this uncertain time, we want you to know, wherever you are that we are with you. Distance and physical separation cannot break the bonds we have made in this community.
Read MoreWhat COVID-19 does to the human body
Home / Blog / What COVID-19 does to the human body Munich design house Kurzgesagt explains in an easy-to-understand video what happens to the human body once it has been infected with COVID-19. They look at how infection occurs, what cells are involved in both enabling and killing off the virus and how the autonomic immune…
Read MoreDealing with Uncertainty
During this tumultuous time, Dr. Geret Giles offers some advice on how to deal with uncertainty.
Dr. Geret Giles is a licensed psychologist with a private practice in Pleasant Grove, Utah…
Read MoreWhat is TeamCCF?
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,…
Read MoreWhat is TeamCCF?
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,…
Read MoreMusically Inclined Patients & Survivors- This is for you!
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…
Read MoreMy 15 years with CCA
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…
Read MoreFebruary 12th is World Cholangiocarcinoma Day!
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…
Read MoreWhy Brad and Geri Clements Gave $100K to the Cholangiocarcinoma Foundation for Research
“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…
Read More2020 Annual Conference Patient Scholarship
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…
Read MoreBachini-Keifer Fund
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…
Read MoreCan a “Silent Killer” be Beaten by Better Data?
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…
Read More2020 Pacific Northwest Cholangiocarcinoma Regional Symposium
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…
Read MoreThanksGiving, ThanksLiving
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”. …
Read More#GivingTuesday 2019
“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…
Read MoreTake Control of Your Health Data
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…
Read MoreEverything Happens for a Reason
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…
Read MoreMike Shane Memorial Fund
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…
Read MoreOktoberfest 2019
On September 21, 2019 Heidi Rhea’s dream of having a successful and lively family friendly Oktoberfest celebration, in support of the Cholangiocarcinoma Foundation (CCF), came true. The 1,200 plus attendees surprised even Heidi herself. Heidi, a patient of cholangiocarcinoma, is also an active volunteer with CCF. She plays a crucial part in helping bring awareness…
Read MoreNotes from Chicago
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…
Read MoreTeamCCF at the Chicago Marathon
TeamCCF had 18 runners participate in the 2019 Bank of America Chicago Marathon, Sunday, October 13th. This year’s team was the largest to date with men and women of all ages from 13 different states. Together the team raised an unprecedented $49,485. And they will continue to fundraise through the month of October. Runners participate,…
Read MoreNo One Fights Alone
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…
Read MoreBreast cancer survivor speaks out about being your own advocate
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.
Read MoreRare Cancer Day
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…
Read MoreSuggested Reading – Graeber
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.…
Read MoreWhy Jan & Dean Meyer Gave $125,000 to the Cholangiocarcinoma Foundation, and why they hope others will too
“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…
Read MoreUniversity of Chicago Regional Symposium
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…
Read MoreCholangiocarcinoma Patients with a Specific Genetic Biomarker Now have a New Treatment Option
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…
Read MoreImmunotherapy
Our friends at Memorial Sloan Kettering have put together an excellent animation explaining Immunotherapy.
Read MoreFive Biopharma Companies Headline Industry Night at Cholangiocarcinoma Foundation Annual Conference
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…
Read MoreSaha Laboratory Opens Doors to Study Highly Lethal Cancer of the Bile Ducts
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…
Read MoreFall 2016 Newsletter
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…
Read MoreCancer Moonshot
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…
Read MoreCharlie Chanaratsopon, CEO and Founder of “Charming Charlie” Cares
The abbreviation for cholangiocarcinoma, a rare form of liver cancer is “CC” however, one “CC” patient in Oregon prefers to think of it as “Charming Charlie.” Charming Charlie stores are filled with colorful clothing, beautiful jewelry, amazing accessories, delightful employees and enthusiastic shoppers. — Lisa Layton SALT LAKE CITY, UTAH, UNITED STATES, September 13, 2016…
Read MoreCampaign for the CURE: Meet Kris Jacobs
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…
Read MoreCampaign for the CURE – Meet Sarah and her husband Andy
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…
Read MorePhotos from ASCO 2016
“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…
Read MoreAdvocacy, Public Policy and the Cholangiocarcinoma Foundation
Influencing health care in the legislative arena assuring for an effective health care system is of great interest to the Cholangiocarcinoma Foundation and the patient community at large. We recognize that many issues are too big or complex to be easily resolved by a single organization and that it requires the knowledge of organized groups.…
Read MoreAnother Fundraiser Spotlight
A great email we just received from Karen… Our family held a Family Reunion two weeks ago in Richmond, Virginia. During the reunion, we had a Silent Auction to raise money to donate to the Cholangiocarcinoma Foundation in honor our Mother who passed away from cholangiocarcinoma on 12/10/2011. We raised $1,079.00 amazingly enough! Thank you…
Read MoreResearch Grant Opportunity in Cholangiocarcinoma Young Investigator Award (YIA)
The Conquer Cancer Foundation of ASCO is now accepting applications for the 2016 Young Investigator Award (YIA). The YIA is a one-year, $50,000 grant that provides research funding to promising physicians who are planning an investigative career in clinical oncology. The award is targeted towards physicians in their final years of oncology subspecialty training. For…
Read MoreWebinar: Using “Spacers” for Safer Delivery of High Dose Radiation Therapy
Webinar: Using “Spacers” for Safer Delivery of High Dose Radiation Therapy High dose radiation therapy is effective in the treatment of liver tumors. However, the greatest limitation in the use of radiation is not the liver itself, but rather adjacent organs like the stomach or intestines, which do not tolerate high doses of radiation therapy.…
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