Cholangiocarcinoma Foundation

Today, we celebrate World Gratitude Day, a reminder of the importance of expressing appreciation for those who make a difference. 💚

We want to extend our heartfelt gratitude to our community, which is dedicated to volunteering, caring, mentoring, and fundraising. Your hard work and passion drive our mission forward and bring hope to so many.

Let’s spread positivity and acknowledge the amazing efforts of those around us. We invite you to join us in this celebration by sharing your specific thanks to someone special in the comments below. 👇

Thank you!

📣 Registration is now open for the 2024 Houston Cholangiocarcinoma Symposium! 🚀 Mark your calendars for December 13 at MD Anderson Cancer Center, where top experts, researchers, healthcare professionals, patients, caregivers, and advocates will gather for a transformative event.

This symposium is your chance to learn about the latest breakthroughs and address key challenges in cholangiocarcinoma research and care. It offers patients, caregivers, and providers the unique opportunity to speak directly with experts in the field of cholangiocarcinoma to get their questions answered. Join this important dialogue!

Secure your spot today: https://cholangiocarcinoma.org/2024-houston-cholangiocarcinoma-symposium/

We are still reflecting on the Strength in Community, Hope in Research event hosted last week in Seattle at Fred Hutch. This amazing experience would have have been possible without the dedicated Seattle CARE team's planning and enthusiasm. Thank you, Kathy Grimm Virgallito, Duncan Foley, and Kathy Harger.

We are heartened by this community and members' finding new ways to connect and assist each other. 💚

🌿 “True understanding comes from experience.” 💚 Pam Fisher, a volunteer mentor with CholangioConnect, shares how becoming a mentor not only allowed her to help others navigate the fear and confusion of a cholangiocarcinoma diagnosis, but also brought healing and understanding to her own journey. 🤝 Through CholangioConnect, mentors offer support, guidance, and empathy to those facing this rare cancer. You’re never alone in this community.

Learn more about CholangioConnect and how you can connect with a mentor at curecca.org 🌟

We’re excited to announce that new CCF merchandise is now available for pre-sale! You can choose from zip-up hoodies, pullover hoodies, and a cozy quarter-zip fleece—all perfect for cooler weather and spreading cholangiocarcinoma awareness this holiday season. Awareness t-shirts and a limited number of Stanley Cups are also available.

By ordering now through October 25, you'll receive your items by Thanksgiving—just in time to stay warm and show your support. Best of all proceeds from every purchase directly fund vital research efforts and essential programs for patients and caregivers.

Thank you for being part of our mission.

Order soon here: https://store.cholangiocarcinoma.org/?_gl=1*1u1p8r9*_ga*MjAxODU5MzI4LjE3MjI5NTQ0MTY.*_ga_HEL9BJ7WX3*MTcyNjc1NzUzOC40MC4xLjE3MjY3NjAyNzEuNjAuMC4w

We’re pleased to announce that our Luminations videos, "Understanding Your Clinical Trial Results," are now available in Mandarin and Spanish! 🗣️

👩‍🔬 Keeping track of treatment options and understanding results can feel overwhelming, especially when language barriers add another layer of challenge. By making this crucial information available in multiple languages, we’re ensuring that more patients and families worldwide can access the insights they need to make informed decisions about their care.

💡 Knowledge is power; no one should be left behind so please help us spread the word about our educational materials. Together, we can bring critical resources to those who need them most.

📽 Videos available here: https://cholangiocarcinoma.org/educational-videos/

Over the years, CholangioConnect volunteer mentors have served more than 1,300 patients and caregivers. These volunteers provide invaluable one-on-one emotional support and critical resources as only someone with a personal connection to cholangiocarcinoma can. Our program is free, and the connections between mentors and mentees have offered comfort and guidance through challenging times.

We require more mentors to meet the growing needs of our patient and caregiver community. Those who have experience with cholangiocarcinoma as a patient, caregiver, or bereaved caregiver -- you can help!

By becoming a volunteer mentor, you can:

💚Provide support and guidance
🤝Share your experiences and insights
🌿Find meaning in giving back to the community

For more information contact [email protected]. Thank you!

💚Strength in Community: We believe in the power of connection at the Cholangiocarcinoma Foundation.

Our virtual support groups and educational webinars offer a safe space for those impacted by cholangiocarcinoma to share their experiences and learn from others, including medical professionals and disease experts. Join us for these virtual sessions, which sometimes feature special guest moderators, and be part of a supportive community. Learn more and register today: https://cholangiocarcinoma.org/virtual-support-groups/

It was an honor to have patients, caregivers, providers, and researchers gather together in Seattle for the Strength in Community, Hope in Research event held at Fred Hutch. Planned by CCF’s volunteer CARE team, it was sponsored by Taiho and included great conversations, presentations, and a tour of the Kugel lab.

Members of the Ponte Vedra community are coming together to honor the memories of Emily Leeds and Jeff McCrea, beloved community members who both passed away from cholangiocarcinoma in the past three years. They will be hosting the Second Annual Heartbreak to Healing Bridge Challenge on October 5, and raising critical funds for the Cholangiocarcinoma Foundation. 💚💚

The “Heartbreak to Healing Bridge Challenge” involves running, rucking, or walking 1.3 miles each way over the Palm Valley Bridge in Ponte Vedra, Florida. The journey over the bridge signifies the action, commitment, and perseverance required for healing. Each participant chooses how many laps to run over the bridge, whether that’s doing 2.6 miles or 26.2 miles. But many others along the route will participate by encouraging and cheering for those on the journey.

To support the “Heartbreak to Healing Bridge Challenge,” please visit https://curecca.link/HeartbreakBridge.

💚 On National Day of Encouragement, let's lift each other up! Whether you're a patient, caregiver, or loved one, remember that you are never alone on this journey. CCF offers support, guidance, a mentor, and more. 💚

Learn more at https://curecca.link/newlydx.

🕊️ Today, we take a moment to honor and reflect on the lives lost and the resilience shown on 9/11. As we remember the courage, strength, and unity that emerged from such a tragic day, let’s continue to stand together in support of those impacted. 💚

🌟 Discover Stories of Hope, Innovation, and Community 🌟

Looking for inspiring stories, the latest clinical trials, and updates on groundbreaking research in cholangiocarcinoma? 🧬💡

Visit the Cholangiocarcinoma Foundation blog! You'll find: ✨ Patient and caregiver journeys that highlight hope ✨ Cutting-edge clinical trial updates and research breakthroughs ✨ The power of community coming together to support each other.

Stay informed, be inspired, and join us in improving treatments and finding a cure for cholangiocarcinoma. 💚💪

📖 Check out the blog: https://cholangiocarcinoma.org/blog/

Please join us for the 2024 Chicago Cholangiocarcinoma Symposium, which will take place on Friday, September 27, from 9 a.m. to 3 p.m. at the David Rubenstein Forum, Hyde Park Campus. Guest speakers include CCF Chief Medical Officer Dr. Juan Valle and UVA Health's Dr. Nicolas Goldaracena.

Thanks to UChicago Medicine, AstraZeneca, Daiichi Sankyo US , Incyte, Jazz Pharmaceuticals, and Servier for sponsoring this free event.

This is an opportunity to connect with others affected by , meet leading experts in the field, and engage in meaningful discussions.

🗣 Network with providers, experts, and individuals and families who share similar experiences
📚 Learn from leading experts about the latest advancements in cholangiocarcinoma treatment.
🤝 Engage in interactive Q&A sessions and panel discussions
⚕ Gain insights into both systemic and non-systemic therapies

Register at https://curecca.link/Chicago24.

We are glad to be partnered with Savor Health to bring you Ina®, The Intelligent Nutrition Assistant! 🍽️💪 Ina® offers 24/7 personalized, evidence-based nutrition support to help patients with cancer stay strong and manage symptoms. 💚✨

Learn more at https://adchol.savorhealth.com/portal/.

💚Hope in Action 💚

This past week, a remarkable group of patients with cholangiocarcinoma experienced the transformative Epic Experience camp in Colorado, coming together with fellow Survivor Thrivers for a week filled with joy, connection, and adventure.

No one should face cholangiocarcinoma alone, which is why opportunities like this camp are so meaningful. The strength and spirit of these campers inspire us and highlight the power of community.

From paddling on the water to evenings by the fire, shared laughter to moments of reflection, there are moments to thrive.

The International Cholangiocarcinoma Patient Registry (ICPR) unites patients and the global research community. By contributing your health records, you become a part of research initiatives helping advance treatments for all those affected by cholangiocarcinoma. All personally identifying information is removed, and security is maintained.

As a unified community, we provide hope in research, driving significant advancements in understanding and treating this disease. Join this community-driven mission and experience the strength found in a shared community.

Register today at https://cholangiocarcinoma.org/join-the-patient-registry/.

Join the Patient Registry The International Cholangiocarcinoma Patient Registry (ICPR) unites patients and the global research community.

Thanks to CCF volunteer and Elite Ms. Petite USA Amy Jo Payne for ensuring Bluegrass Hospitality Group Restaurants (BHG) recognizes the CCF as a charitable organization to receive 20% of the purchase amount for ONLINE gift cards sold!

BHG gift cards can be redeemed at Malone's, Malone's Prime Events & Receptions, Drake's, OBC Kitchen, and Harry's American Bar & Grill in seven states: Kentucky, Indiana, Tennessee, North Carolina, Missouri, Alabama & Illinois!

Instructions on purchasing the cards are below! This is a delicious way to make a difference. 💚

Lynn Williams of Coffs Coast, Australia, celebrates being a CCA survivor and thriver. Thank you for sharing your story, Lynn, and shining a light of hope 💚!

The Cholangiocarcinoma Australasia Community has been a big part of Lynn's support; we love seeing examples of Strength in Community.

Lynette Williams Celebrates Three Years Free Of Cholangiocarcinoma - News Of The Area LYNETTE Williams from Coffs Harbour is celebrating being three years free of the cancer Cholangiocarcinoma. It’s a milestone that means “so much to me”, she told News Of The Area. Advertise with News of The Area today. It’s worth it for your business. Message us. Phone us – (02) 4981 8882....

We are proud to share that CCF Chief Medical Officer Dr. Juan Valle, has been honored with the title of Professor Emeritus at The University of Manchester, where he previously served as Professor of Medical Oncology within the Division of Cancer Sciences, Faculty of Biology, Medicine and Health. This prestigious designation is a testament to his extraordinary contributions to the field of oncology and commitment to advancing cancer research.

The title of Professor Emeritus is awarded to distinguished faculty members upon their retirement or departure, recognizing their exceptional service, academic achievements, and influence in their field of expertise. This honor acknowledges Dr. Valle's profound influence on medical oncology and reinforces his esteemed position within the global medical community.

We are so glad he is a part of helping advance treatments for patients with cholangiocarcinoma.

More here: https://cholangiocarcinoma.org/dr-valle-honored-as-professor-emeritus/

🌄 This week, a group of survivors is taking in the stunning Colorado views while embarking on an incredible outdoor adventure!

Epic Experience empowers cancer survivors and caregivers to live beyond cancer through adventure camps, meetups, and educational programs. Over the next week, they'll focus on uplifting the cholangiocarcinoma community.

The Cholangiocarcinoma Foundation is grateful for the opportunity these individuals have to experience the beauty of the mountains, time together, and CCF’s Strength in Community. We can't wait to hear their stories and see more photos! 💚

Happy Labor Day from the Cholangiocarcinoma Foundation! 🎉 Today, we celebrate the hard work, dedication, and resilience of everyone, especially those in the cholangiocarcinoma community. Enjoy the day, and take a moment to relax and recharge! 💪💚

🌟 September Support Groups 🌟

Discover the strength of unity in our CCA Support Groups! Connecting patients, caregivers, and loved ones, these groups offer a safe space to share experiences, gain insights, and find solace in a community that understands. Join us today – because facing cholangiocarcinoma is easier when you have a supportive community by your side.

Register today at: https://cholangiocarcinoma.org/virtual-support-groups/.

"In my Cancer Warrior Era" T-shirt 💚✨

Together we can shine a light on and connect with others who share this journey. Available now at https://store.cholangiocarcinoma.org/product/warrior-era-tee.

A huge thank you to Kevin Coyle for hosting the 6th annual “A Hike for Jill. A Hike for a Cure.” on August 24th! 🌄 Kevin and his incredible team reached the beautiful summit of Mt. Madison and raised $5,300.98 in memory of Jill. Over the past 6 years, they’ve raised an amazing total of $26,515.77! We’re so grateful for your dedication and support in the fight against cholangiocarcinoma. 💚

Carli Good and Lynn Lazzaro discuss the importance of organizing personal and legal affairs following a diagnosis. Lynn shares her experiences and emphasizes the peace of mind that comes from being prepared.

"In January 2016, I heard the three life-altering words: “You have cancer.” Specifically, cholangiocarcinoma— a term I’d never encountered before. As the initial shock subsided, I decided to fight with everything I had to live my best life and, simultaneously, get my “house in order” if I wanted peace of mind through this difficult time.

One of the invaluable resources CCF offers in partnership with FreeWill.com is a tool to help you organize your affairs and plan for the future. This has given me and my family such peace of mind.

I often describe my treatment journey as a beautiful tapestry woven together with the support of my medical team, CCF, and the hope that I hold onto every day. If even one thread were pulled, that tapestry might unravel. I continue to nurture my hope by supporting all three elements of that tapestry. That is why I am including a legacy gift to help propel CCF’s mission forward—to find a cure, expand research and treatments, and support patients. It is simple to do this through FreeWill.

I hope my story can encourage anyone seeking hope as we work towards finding a cure and improving the quality of life for all those affected by cholangiocarcinoma." -CCA patient Lynn Lazzaro

For more information, visit https://cholangiocarcinoma.org/get-involved-the-cholangiocarcinoma-foundation/ or create your will now: https://curecca.link/freewill.

A Survivor’s Guide to Planning: Ensuring Peace of Mind Carli Good and Lynn Lazzaro discuss the importance of organizing personal and legal affairs following a cholangiocarcinoma diagnosis. Lynn shares her experie...

📽️ Check out Part 2 of our Cholangiocarcinoma 101 series! These patient-friendly videos break down complex terminology and explore treatment options and resources to help you navigate your journey with more confidence. Don't miss it!

Cholangiocarcinoma 101, Part 2 This is Part 2 in a series to explain cholangiocarcinoma and walk patients and their caregivers through diagnosis, treatment, care, and resources.

🚙 🦆 Calling all Jeep enthusiasts, music lovers, and members of the CCF community to join Samantha Yeager and family at Slate Farm Brewery in Whiteford, Maryland, on Sunday, September 15, for the Crush Cholangio Jeep Jam & Festival benefiting the Cholangiocarcinoma Foundation in honor of her aunt, Christine W. 🦆🚙

“My aunt was diagnosed with Cholangiocarcinoma in July 2022. My sister and I found a fundraising event that included Jeeps to benefit The Cholangiocarcinoma Foundation and had to attend with her! We had a great day and I decided to take over the event for this year since I have a background in planning nonprofit events.” Samantha explained.

The Jeep community is strong, and while my Aunt doesn't have a Jeep herself, several family members do, and it's a fun way to engage the community and raise some much-needed funds! She is a fighter and cannot wait to be at this year's event!”

To learn more about the event and reserve a spot for your Jeep, visit https://www.eventbrite.com/e/crush-cholangio-jeep-jam-festival-2024-registration-921620781567.

The Jackson and Pryor families have turned their personal battles with cholangiocarcinoma into powerful stories of hope and resilience. Their commitment to supporting the Cholangiocarcinoma Foundation by sharing their stories and raising awareness is truly inspiring.

Whether running marathons, fundraising, or advocating for better patient outcomes, these families exemplify strength in the face of adversity. We’re honored to have them as part of our community. Learn more about their stories and how they make a difference: https://cholangiocarcinoma.org/two-families-take-on-chicago-via-team-ccf/