Your Year-End Giving Can Make A Long-Term Impact

Three impactful ways you can make a year-end gift As 2020 comes to a close, there are a number of opportunities to support the work of the Cholangiocarcinoma Foundation. One good thing to come out of the COVID Pandemic is the CARES Act (Coronavirus Aid, Relief, and Economic Security Act) provisions for charitable giving. The…

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Cholangiocarcinoma Foundation celebrates FDA’s Acceptance Of New Drug Application For Infigratinib For The Treatment Of Cholangiocarcinoma

On behalf of patients and families impacted by cholangiocarcinoma, the Cholangiocarcinoma Foundation (CCF) celebrates the December 1, 2020 FDA acceptance of Infigratinib. QED Therapeutics, is a subsidiary of BridgeBio, which is focused on precision medicine for FGFR-driven cancers. Infigratinib is an oral FGFR1-3 selective inhibitor, for individuals with cholangiocarcinoma, or cancer of the bile ducts.…

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Survivor Highlight: Libby Wolfe

My name is Libby Wolfe. I live in Pewaukee, Wisconsin. I grew up in Connecticut, went to college in Virginia, and moved to Chicago in the 1970s. In Chicago, I worked as a property manager for a Real Estate firm.

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Patient Support Group

Each week we present the latest information and updates relevant to the CCF community. Support Groups will be held the 1st (Patient) and 3rd (Caregiver) week of every month and Educational Webinars will be held on the 2nd and 4th week of each month. Please join us the first Thursday of the month for a…

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Stacie Lindsey to Receive Luminary Award for Advances in GI Cancers

Stacie C. Lindsey, Chief Executive Officer & Founder of the Cholangiocarcinoma Foundation is one of five leading individuals who will receive a Luminary Award in GI Cancers from OncLive and The Ruesch Center at their virtual 11th Annual Ruesch Symposium. The award winners are being honored for their lifetime achievements focused on finding cures for…

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Giving Thanks by Giving Back

Help us meet our goal of 100 new sign-ups by 2021! Join the CCF registry through Ciitizen to advance research for cholangiocarcinoma, and Ciitizen will donate $25 to CCF. During the “Giving Thanks by Giving Back” Campaign, CCF and Ciitizen are partnering up with the goal of helping at least 100 patients collect, summarize and share…

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#GivingTuesday 2020

Giving is not just about making a donation, it’s about making a difference! Last year on Giving Tuesday, people came together on Facebook to raise more than $120 million 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…

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Webinar: NuTide 121 Clinical Trial

NuCana will introduce the science behind NUC-1031, the medicine being compared in combination with cisplatin in the NuTide:121 study against the current standard of care in Biliary Tract Cancer, gemcitabine and cisplatin.

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CCF wants you to join it’s first ever Turkey Trot

Join the Cholangiocarcinoma Foundation’s first Virtual Turkey Trot Run/Bike/Walk! TeamCCF and the Cholangiocarcinoma Foundation are hosting their 1st Annual Virtual Turkey Trot. It is open to different physical activities such as running, biking, or walking. The goal is to encourage participation in healthy and fun physical activity while raising funds for cancer research. Participants choose…

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Roz Kuvakos, A Life Rooted in Aloha

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…

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Five for Friday – 5 of our latest blog posts

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.

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2021 Cholangiocarcinoma Annual Conference to be held March 31 Through April 2, 2021

Drs. Bridgewater and Meric-Bernstram to Chair 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. Dr. Bridgewater specializes in gastrointestinal oncology, with a particular interest…

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Should I get a Second Opinion?

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.

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Lisa’s Rare Cancer Story

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.

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Rare Cancer Day 2020

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.

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Grateful Patient Day 2020

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.

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Green Out for Our Baseball Coach

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.

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Caring for the Caregiver

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.

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The woman who forgot today

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.

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Five for Friday – 5 Resources to Help Navigate Depression.

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.

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Moving for the Cure Recap

TeamCCF and the Cholangiocarcinoma Foundation held its first-ever virtual athletic fundraising event, Moving for the Cure, the week of July 5th.  “With Covid-19 restrictions in mind, TeamCCF wanted to host a fundraiser that would bring family and friends together in a fun and safe way,” explained Meredith McGuffage, TeamCCF Coordinator.  Each participant was asked to…

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Five for Friday – 5 fundraising events

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.

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Five for Friday – 5 highlights from the Annual Conference

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.

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The 2020 Annual Conference was a Success!

We would like to extend our sincerest thanks to all those who joined us online during the 2020 Virtual Annual Conference on July 22-24th. More than 1,600 individuals from 49 states and 44 countries representing healthcare, industry, patient advocacy organizations, patients, caregivers, academia, and supporters logged in for 3 days of connection through inspirational stories…

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Webinar: Patient Health Data Rights & Privacy

Subscribe to our YouTube Channel Do you have questions about your health data privacy and your rights to access your own medical records? Join us for an educational webinar with health privacy and security expert Deven McGraw, who is Ciitizen’s Chief Regulatory Officer. Deven previously directed U.S. health privacy and security as Deputy Director, Health…

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Cholangiocarcinoma Foundation Consortium Moves to Clarify and Promote Consistent Use of Common Terms for Biomarker and Germline Genetic Testing

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.…

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Two webinars this week!

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…

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CCF is hosting a Lip Sync Battle!

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…

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CCF Webinar Series : July’s Patient Support Group

We’ve loved connecting with you each week and hope you’ll continue to do so. Our Weekly Webinars provide our CCF community with the latest information and updates pertaining to CCA. Our hope is to continue to connect, inspire and educate. Each week we present the latest information and updates relevant to the CCF community. Support Groups will…

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Complete a 5-minute COVID survey for a chance to win CCF Gear

The COVID 19 pandemic is the most wide-reaching and devastating public health event of our lifetimes. It has reached nearly every corner of the globe. Even those who have not contracted the disease have been affected by it. The Cholangiocarcinoma Foundation would like to know how the COVID-19 pandemic has affected your, or your loved…

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Webinar: Clinical Trials 101

Subscribe to our YouTube Channel The Cholangiocarcinoma Foundation is here for you! We’ve loved connecting with you each week and hope you’ll continue to do so. Our Weekly Webinars provide our CCF community with the latest information and updates pertaining to CCA. Our hope is to continue to connect, inspire and educate. Our Clinical Trials…

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Five for Friday – 5 ways you can get involved with Moving for the Cure

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

CCF is holding it’s first athletic fundraiser: Moving for the Cure! Enjoy any activity, anywhere, and raise money for the Cholangiocarcinoma Foundation. All ages and athletic abilities can participate.

This week we present 5 ways you can get involved with Moving for the Cure.

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#MapItForward & the Real World Genomics Study Launch!

Subscribe to our YouTube Channel Register Here What is #MapItForward & the Real World Genomics Study Recent medical advances support the need for all cholangiocarcinoma patients to receive biomarker testing as part of their treatment, however the rate at which patients are actually receiving this testing in the real world is unknown. Real-world evidence is…

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We know there is work to do…

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…

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CCF Webinar Series : June’s Patient Support Group

You spoke and we listened! In light of COVID-19 pandemic, the Cholangiocarcinoma Foundation created a weekly webinar series to help our community navigate through these difficult times. The response has been overwhelming and we will continue the weekly gatherings as long as there is interest! Based on an abundance of feedback, the weekly sessions will…

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CCF Webinar Series : Caregiver Support Group

You spoke and we listened! The Cholangiocarcinoma Foundation CCF is excited to announce our newest series of webinars. Each week we bring you the latest information and updates relevant to the CCF community. Our hope is to continue to connect, inspire, and educate. These bi-weekly educational webinars feature the newest developments and presentations from experts…

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CCF Weekly Webinar Series: Dealing with Anxiety, Fear & Depression

You spoke and we listened! The Cholangiocarcinoma Foundation CCF is excited to continue our series of webinars. Each week we will bring you the latest information and updates relevant to the CCF community. Our hope is to continue to connect, inspire, and educate. Bi-weekly educational webinars will feature the newest developments and presentations from experts…

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New Weekly CCF Webinar Series

You spoke and we listened! The Cholangiocarcinoma Foundation CCF is excited to announce our newest series of webinars. Each week we will bring you the latest information and updates relevant to the CCF community. Our hope is to continue to connect, inspire, and educate. Bi-weekly educational webinars will feature the newest developments and presentations from…

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High-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…

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FDA 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…

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The 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…

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#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.

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CDC 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.

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Volunteer 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!

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Three Tips for Reluctant Superheroes

Home / Blog Post / Page 2 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…

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We’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.

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Dealing 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…

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What 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,…

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What 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,…

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Musically 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…

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My 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…

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February 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…

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2020 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…

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Bachini-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…

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Can 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…

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2020 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…

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ThanksGiving, 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”. …

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#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…

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Take 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…

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Everything 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…

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Mike 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…

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Oktoberfest 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…

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Notes 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…

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TeamCCF 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,…

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No 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…

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Rare 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…

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Minneapolis Meetup

As the “instigator” who 11 years ago blissfully started getting mothers of active-duty Marines and eventually Marine vets to meet together to share experiences, information, and to just be with others “who get it”, I’m doing it again thanks to CCF.   At the last annual conference, I met Caitlin Fortuna and her youngest daughter.…

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Suggested 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.…

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Why 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…

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University 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…

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Webinar: CCF & Ciitizen-Take Control of Your Health Data

On August 12, the Cholangiocarcinoma Foundation announced a partnership with Ciitizen. This partnership is formed around the belief that you should have full access to your health data. Cholangiocarcinoma patients have immediate access to the Ciitizen platform, which enables you to gather your medical records and leverage this platform to control your health data. When…

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Repurposing Drugs for Cholangiocarcinoma

Over three years ago I was diagnosed with an incurable cancer, at the age of just 39 when my 3 children were under the age of 5. Since then I have undertaken countless treatments including 30 chemotherapy cycles spanning 4 types, radiation, cyberknife, SRS, ablation, dendritic cell therapy, targeted drugs and immunotherapy, always with the…

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Cholangiocarcinoma Foundation Awards $365k in Research Fellowship Grants in Largest Funding Cycle to Date

Since 2015, the Foundation has awarded more than $1.9 million in funding for innovative, high-quality research. SALT LAKE CITY, UTAH, USA, August 6, 2019 — The Cholangiocarcinoma Foundation (CCF), a nonprofit organization funding novel research for bile duct cancer, has awarded the 5th cycle of its Research Fellowship Program. CCF is pleased to support 7 projects for…

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The Cancerbet – or What Cancer Does and Does NOT do – from A to Z

A          Cancer AGES us but isn’t aging what we long for?! B          It BLINDS us to far away, future concerns. It brings us to a “near- sighted” living where we don’t miss the present. C          Cancer gives us CAUSE – a reason to try treatments and trials for new therapies; not only for our own survival, but for those who follow…

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Thoughts and Memories of Marion Schwartz

Marion and I worked together daily for over 10 years building the foundation and we’ve talked often since her retirement. She worked with many of you over the years to make sure the patient voice was considered in all endeavors and she admired the way you treated “her” patients. She took great pride in her…

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Mouse Models and Avatars

According to the U.S. Bureau of Labor Statistics, in 2008, healthcare positions accounted for 12% of all private-sector jobs, a number that has consistently been on the rise.(1) Included in this data were such vocations as pharmacists, physical therapists, dental hygienists, medical assistants, home health aides, etc. Many non-M.D. professionals within this population have had…

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How to Sign Up for Google Alerts

My recent(ish) surgery knocked me down a little more than expected, so I won’t be tackling the complex topic of mouse models/mouse avatars (with a detour into personalized medicine) until my next post in two weeks.  In the meantime, I wanted to share a neat trick a fellow attendee introduced me to at this year’s…

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Love and Hope

Reading this blog you get a lot of one person’s perspective, but so many lives have been impacted by cholangiocarcinoma.  When I asked fellow patients to give their perspectives from the conference, Tom, Heidi, Catherine, and Lois all graciously offered to share their thoughts.  If any readers didn’t share but would like to, please feel…

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Patients, Physicians, Progress

Science has never been my forte.  That’s not to say it disinterests me, but it never held my attention like the humanities.  For someone who has no natural talent for biology, however, I spend an inordinate amount of time thinking about cells.  I ponder the cells dividing in my own system, somewhat dispassionately considering the…

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Empowerment – Helen Scott’s Story

It’s natural for cancer patients to, at some point in their journey, indulge their curiosity.  When you are diagnosed with a disease as rare as cholangiocarcinoma, one of the first questions that comes to mind is: why?  A person wonders if maybe they have a genetic predisposition, or maybe they’ve unknowingly encountered carcinogens that altered…

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Even Keel – Andy Tebbutt’s Story

I can’t speak for other rare cancer populations, but the cholangiocarcinoma community is fairly tight knit.  In some ways, we are like members of the same college class after graduation.  We’re spread all over the globe, but when we talk it’s with the familiarity and an intimacy of old friends, and we even occasionally gather…

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Roller Coaster – Barry Cohen’s Story

Written by Cait with edits of style and flair by Barry Cohen Depending on your perspective, roller coaster might have a negative connotation.  For Barry Cohen though, it doesn’t, and that’s in no small part because he chooses for it to be positive.  Speaking with him for this feature was both entertaining and informative, and…

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