Kayla is 21 years old, and unfortunately, cancer has been part of her story for most of her life.

When she was just 18 months old, Kayla was diagnosed with acute myeloid leukemia (AML). As a young child, she underwent a cord blood transplant and survived something no child should ever have to face. We thought that chapter of her life was behind us.

Then, in October 2025, at just 20 years old, Kayla was diagnosed with perihilar cholangiocarcinoma (bile duct cancer).

What was originally expected to be surgery turned into the devastating discovery that her cancer was more extensive than anticipated and could not be removed as planned. Since then, she has endured treatment, procedures, hospitalizations, complications, nutritional support with TPN, and more uncertainty than anyone her age should have to carry.

Kayla’s tumor has some unusual molecular characteristics, including MSI-high/dMMR disease, which allowed her doctors to treat her with immunotherapy. She has had a remarkable response in many areas, although her journey is far from over. We are currently facing another concerning lymph node that her doctors are working to understand.

Through everything, Kayla continues to find reasons to smile.

As her mom, one of the hardest parts has been watching my daughter fight cancer for a second time after everything she already survived as a child. But there is so much more to Kayla than cancer.

If you really want to know Kayla, there are three things she absolutely loves: shopping, going to concerts, and collecting Jellycats.

Shopping is one of her favorite things to do. She loves getting out, browsing stores and finding something new. Music and concerts are another huge source of happiness for her. Getting dressed up, going to a concert and having that experience gives her something exciting to look forward to. For a little while, she gets to simply feel like a normal 21-year-old.

And then there are her Jellycats. She loves collecting them, and they have become one of those simple, fun things that bring her a lot of happiness.

Kayla also loves spending time with the people she loves, cooking and baking with me, laughing with family, and making memories whenever she feels well enough. Once Kayla gets her heart set on something, she is incredibly determined. I think that is a big part of how she copes with everything she has been through.

She tries very hard not to let cancer become her entire identity.

When she feels well enough, she wants to get out, shop, go to concerts, do the things she loves and have experiences to look forward to. On the harder days, coping may simply mean resting, being surrounded by family, watching something she enjoys or finding something that makes her laugh. We have learned to appreciate the good days in a completely different way.

We live in East Tennessee and travel approximately three hours each way to Vanderbilt in Nashville for much of Kayla’s cancer care, with additional consultations and care at Mayo Clinic in Rochester, Minnesota. The travel, hospital stays, treatments and day-to-day realities of caring for a young adult with a rare cancer have become a major part of our lives.

Our faith, our family and the support of the people around us have carried us through some incredibly difficult moments.

Kayla has endured more medically than most people experience in a lifetime, but she continues to find reasons to smile, laugh, make plans and look forward to the next thing she wants to do.

Being diagnosed with a rare cancer at 21 can feel incredibly isolating. That is one reason connecting young adults with others who understand what they are going through is so important. Knowing that you are not the only young person facing this disease can make an enormous difference.

We hope that by sharing Kayla’s story, other young adults and families facing cholangiocarcinoma will feel a little less alone. We also hope her story helps raise awareness of the fact that cholangiocarcinoma can affect young adults, too.

Kayla’s story is still being written. And for now, we are grateful for the good days, the laughter, the concerts, the Jellycats, the time with family and every reason we have to keep looking forward.

Follow Kayla’s journey:

Facebook: Kayla’s Story
Instagram: @kaylasstory
TikTok: @kayla_cancer_warrior

The post Kayla’s Story: Hope & Joy Through a Second Cancer Journey appeared first on Cholangiocarcinoma Foundation.

Thank you for your interest in joining the Cholangiocarcinoma Foundation team. Please complete the form below to apply. If you have questions, need an accommodation, or are experiencing technical issues submitting this form, please contact hr@cholangiocarcinoma.org.

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Thank you for your interest in joining the Cholangiocarcinoma Foundation team. Please complete the form below to apply. If you have questions, need an accommodation, or are experiencing technical issues submitting this form, please contact hr@cholangiocarcinoma.org.

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On August 17, 2026, OncoSil Medical announced that the U.S. Food and Drug Administration (FDA) granted Humanitarian Device Exemption (HDE) approval to the OncoSil device for adults with unresectable, non-metastatic distal cholangiocarcinoma, including patients with locally advanced disease or those who are not candidates for surgery.

OncoSil is a single-use brachytherapy device that delivers targeted radiation directly into a tumor. Using endoscopic ultrasound guidance, phosphorus-32 (32P) microparticles are implanted within the tumor, providing localized radiation while aiming to limit exposure to surrounding organs. The device is intended to be used alongside systemic therapy.

What Does HDE Approval Mean?

The FDA’s Humanitarian Device Exemption pathway is designed for medical devices intended to treat rare diseases or conditions. Unlike traditional FDA approval pathways, HDE approval does not require the same demonstration of reasonable assurance of effectiveness. Instead, the FDA determines that the device does not pose an unreasonable or significant risk and that its probable benefits outweigh its risks.

The approval is an important development for a population with limited treatment options. Distal cholangiocarcinoma is an aggressive cancer, and many patients are unable to undergo surgery with curative intent.

As a condition of approval, OncoSil’s initial U.S. use will be limited to up to five treatment centers with appropriately trained physicians. An FDA-required post-approval study is also expected to enroll 30 patients and further evaluate the device’s safety and probable benefit.

“Distal cholangiocarcinoma is a rare and aggressive cancer with a significant need for new therapeutic approaches,” said Juan Valle, Chief Medical Officer of the Cholangiocarcinoma Foundation. “The FDA’s HDE approval of this device is an important development, providing eligible U.S. patients and clinicians with an additional treatment option through targeted radiation delivered directly within the tumour.”

As OncoSil becomes available at specialized U.S. centers, continued study will help the medical community better understand its role in the multidisciplinary treatment of eligible patients with distal cholangiocarcinoma. We encourage eligible patients to speak with their providers about this new therapeutic approach.

The post FDA Approves OncoSil™ Device for Distal Cholangiocarcinoma appeared first on Cholangiocarcinoma Foundation.

El Simposio de Colangiocarcinoma de Houston 2026 reunirá en Houston a destacados expertos, investigadores, profesionales de la salud, pacientes y defensores de la comunidad.

Este evento será una importante plataforma para compartir los últimos avances y abordar los desafíos en la investigación y el tratamiento del colangiocarcinoma.

¡Próximamente habrá más información!

Inscripción general

Inscripción para representantes de la industria

Cuándo:
11 de diciembre de 2026

Horario:
8:00 a. m. – 3:00 p. m.

Dónde:
David Rubenstein Forum
Hyde Park Campus
1201 E 60th Street
Chicago, IL 60637

Gracias a nuestros patrocinadores

Thank you to our sponsors

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Thank you to our sponsors

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Whether you are a patient, caregiver, loved one, or healthcare professional, you are part of the cholangiocarcinoma community and welcome to attend.

Seattle CARE Team Gathering

Friday, September 11, 2026
11:00 a.m.–3:30 p.m. PT
Fred Hutch Cancer Center – South Lake Union
Lunch provided

Join the Cholangiocarcinoma Foundation’s Seattle CARE Team for a special afternoon of education, connection, and support.

The event will feature expert speakers sharing professional perspectives on cholangiocarcinoma and participating in clinical trials. You’ll also have time to connect with others affected by cholangiocarcinoma and explore complimentary activities and resources designed to support and uplift the community.

Register Here

Questions? Email seattlecareteam@cholangiocarcinoma.org.

Washington, DC/Baltimore CARE Team Gathering

Saturday, October 24, 2026
11:30 a.m.–2:30 p.m.
Owen Brown Interfaith Center
7246 Cradlerock Way
Columbia, MD 21045

Join the Cholangiocarcinoma Foundation for an afternoon of connection, education, and support with others in the cholangiocarcinoma community.

This gathering will focus on bridging the gap between medical needs and the challenges of everyday life. Together, we’ll explore emotional support, practical resource navigation, and care coordination.

We’re pleased to welcome Molly Vencel, Oncology Social Worker at Johns Hopkins Sibley Memorial Cancer Center, as our guest speaker.

Register Here

We hope you’ll join us!

The post In-Person CARE Events: Seattle and Washington, DC/Baltimore appeared first on Cholangiocarcinoma Foundation.

A beloved sister, advocate, and longtime supporter of the Cholangiocarcinoma Foundation, Eve made a remarkable commitment to future patients through her estate plans, leaving a $100,000 legacy gift to advance the Foundation’s mission. Working closely with Eve’s sisters, Alisa Baker and Susanna Baker, CCF identified a way to honor Eve’s life that reflected both her passions and her desire to help others. Their collaboration resulted in the dedication of the Anatomy section of the CholangioPath app, a fitting tribute to someone who believed that movement is medicine.

Eve was brilliant, creative, fiercely independent, and endlessly compassionate. A gifted writer and musician from an early age, she earned degrees in creative writing and education before becoming a high school teacher and later a college writing professor. She encouraged her students to find their own path, believing there was never just one definition of success. Outside the classroom, Eve found healing in movement.

After discovering that long-distance hiking helped her manage depression, she embraced the outdoors with characteristic determination. In her late 30s, she solo-hiked the entire 2,000-mile Appalachian Trail from Georgia to Maine. Along the trail, she met a massage therapist who inspired a new calling. Eve went on to become a master massage therapist, building a respected pain management practice in Brattleboro, Vermont. Her understanding of anatomy, combined with her empathy and compassion, made her an exceptional healer and trusted friend to many.

When Eve was diagnosed with cholangiocarcinoma in 2021, she approached the disease with the same determination that had defined every chapter of her life.

She immersed herself in research, sought innovative treatment options, and connected with other patients to share knowledge and hope. Despite the challenges of a rare and aggressive cancer, she refused to let her diagnosis define her.

She continued hiking whenever she could, including memorable trips through France and Portugal with her sisters.

With the guidance of Alisa and Susanna, Eve’s generous estate gift has been used to sponsor the app’s Anatomy section, creating an enduring tribute that reflects both her profession and her passion for helping others understand the human body.

Every patient who explores this section will benefit from resources designed to explain the anatomy of the biliary system and provide a stronger foundation for understanding cholangiocarcinoma. It is exactly the kind of educational resource Eve believed every patient deserved.

Through her generosity, Eve’s legacy continues to uplift patients and families with knowledge, guidance, and hope. The CholangioPath app can be downloaded here.

The post Eve Baker’s Legacy Helps Others on their (Cholangio)Paths appeared first on Cholangiocarcinoma Foundation.

Sydney inspires others to ask questions, explore treatment options, seek second, third, or even fourth opinions, and advocate for themselves throughout their cancer journeys. She lives each day with an open mind and a clean slate.

She often tells her followers to “just keep swimming”. In March, Sydney was invited to join Team CCF for the 2026 TCS New York City Marathon. She is one of 29 runners who have collectively raised more than $140,300 for the November 1 race, with Sydney personally raising more than $10,218.

Sydney’s efforts extend far beyond NYC Marathon fundraising. She partnered with Little Words Project to design a custom beaded bracelet with the phrase “Happy To Be Here.” After launching the bracelet at the company’s New York City store, overwhelming demand from her social media community led to two additional online sales events. Together, these efforts generated a remarkable $34,635 for the Cholangiocarcinoma Foundation through the sale of 6,927 bracelets.

In June, Sydney collaborated with Sleepy Saturday to create and sell a custom-designed pajama set, resulting in the sale of 753 sets and further expanding awareness and support for CCA.

As part of CCF’s 20th anniversary year, Sydney’s fundraising success earned her special recognition among a small group of extraordinary Community Fundraisers who have each raised $20,000 or more through a single campaign or event. Our peer-to-peer fundraisers are an essential part of our community because they are also advocates, extending our reach into networks and relationships that CCF alone could never access, and turning personal connection into lasting impact.

Through her advocacy, fundraising, and unwavering commitment to helping others affected by cholangiocarcinoma, Sydney has made an extraordinary impact on the CCA community. We are proud to work alongside her and are honored to have Sydney Towle as a Community Champion. 

To support Sydney’s NYC Marathon: visit her page here.

To learn more about corporate partnerships, reach out to Kaitlin Chamberlain, Community Fundraising Director at kaitlin.chamberlain@curecca.org. You can learn more about Team CCF here and visit the Community Fundraising site to learn about other ways to support CCF.

The post Community Champion: Sydney Towle appeared first on Cholangiocarcinoma Foundation.

Behind every mile logged this June was a name. A person. A reason to keep going.

The 2026 30-Mile Challenge brought together patients, survivors, family members, and friends from across the country, all moving with purpose for someone they love. And this year, the stories behind those miles took our breath away.

Participants moved for all kinds of reasons and in all kinds of ways. Survivors celebrated milestones and marked anniversaries. Transplant recipients moved in gratitude and in honor of those still waiting. Family members and friends walked for loved ones near and far, some in the middle of a battle, some carrying a memory. This community showed up as caregivers and friends, people celebrating hope and people holding grief, often at the same time. Whatever brought each person to this challenge, one thing was clear: every mile meant something to someone.

Together, you raised $112,351, surpassing our $100,000 goal before the month even ended. Every dollar raised will go directly toward CCF’s mission: funding life-saving research, supporting patients and families, and working toward a cure for a disease that changes lives in an instant.

We also want to offer a special congratulations to our top fundraisers, whose dedication and generosity helped lead the charge:

Scott Workman, $6,042
Conor McManus, $5,066
Dawn Ruppel, $4,761

We are so honored to share their reflections:

“It feels wonderful to have an opportunity to give back and to feel the strength of this community… None of this was easy. My body and I have an uneasy peace often negotiated by a third party, pain. It felt worthwhile. The charitable foundation has helped many like me stay in the fight longer using information and advocacy as power. They also support research for this rare cancer. I hope someday others will face fewer challenges and live longer.”
– Scott Workman

“The 30-mile challenge was a reminder for me every day – a reminder of what our family went through with my dad (who passed away only 2 months after his tumors were first detected) – a reminder of how long it took to finally identify his cancer as cholangiocarcinoma – but also a reminder that we are doing this and supporting CCF so that families can have a better experience in the future – with the hope that more research will be able to help identify CC earlier in patients like my dad, and the hope that more treatment options can become available even when the cancer is identified in later stages after it has already spread.” – Conor McManus

“Joining the June Cholangiocarcinoma Foundation 30 Mile Challenge gave me purpose. Walking the 45 miles in Ken’s memory became a steady, reflective practice for my mental health during a difficult time. As he passed on April 28, 2026 just 2 days shy of his birthday.  Keeping myself outside, or on the treadmill when I traveled in early June for work, and focused on one step at a time—gave my mind space to breathe, and it offered me a positive way to honor him. Finding ways to celebrate Ken and share stories of him are very important to me. 

As I walked, I listened to Ken’s favorite music and let it open the door to important memories and moments I could feel fully, even while grieving. I’m very grateful that 78 donors came alongside this effort, helping raise $4,761, because it reminded me that love can be both personal and shared for a very important cause.”
– Dawn Ruppel

Your commitment inspired everyone around you. Thank you for showing up in such a remarkable way.

In total, 379 fundraising pages were created across Facebook and GoFundMe. Each one of you made a difference. Your steps gave hope. Your voices raised awareness. Your actions fueled progress.

At CCF, we believe in the power of community. The 2026 30-Mile Challenge proved once again just how much we can accomplish when we move forward together.

Thank you for being part of this journey.

Interested in supporting CCF’s mission through your own fundraiser or challenge? We’d love to hear from you. Learn more at cholangiocarcinoma.org or contact Kaitlin Chamberlain at kaitlin.chamberlain@cholangiocarcinoma.org.

The post June 30-Mile Challenge Raises $112,351 appeared first on Cholangiocarcinoma Foundation.