The Cholangiocarcinoma Foundation (CCF) was founded in 2006 by Stacie Lindsey after her brother was diagnosed with cholangiocarcinoma, a rare bile duct cancer. After navigating the world of a rare cancer where knowledge and community were lacking, Stacie and her family created the Cholangiocarcinoma Foundation to ensure others facing the same diagnosis would not have to struggle to access information, resources, and support.
With the mission to find a cure, the Cholangiocarcinoma Foundation supports research projects and facilitates collaboration through the International Cholangiocarcinoma Research Network. Research efforts include the coordination of the International Cholangiocarcinoma Patient Registry, which aims to collect data to improve the early detection and diagnosis of cholangiocarcinoma and to find new treatments. CCF also hosts an annual research conference to bring medical professionals and researchers together with patients, families, and advocates.
In addition to supporting research, the Cholangiocarcinoma Foundation provides information and resources to support the cholangiocarcinoma community. The CCF website hosts a wealth of information about cholangiocarcinoma, including a section entirely for people who are newly-diagnosed, and provides resources to help find a specialist or clinical trial. Other resources include discussion boards, virtual support groups, educational videos, and a program to find a mentor.
The Cholangiocarcinoma Foundation supports research and builds a community to help those experiencing cholangiocarcinoma, and the MyPART Network welcomes CCF as an advocacy partner dedicated to improving the lives of people with rare cancers. Learn more about CCF here.
Learn more about MyPART advocacy partners here.
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MyPART Executive Director, Dr. Abby Sandler, and MyPART’s Communications Manager, Dr. Christina Vivelo, attended the National Organization for Rare Disorders (NORD) Breakthrough Summit in Washington DC on October 16-17th. The conference began with moving patient stories that highlighted the challenges faced by those living with rare diseases and their caregivers. Following the morning session on October 16th, Drs. Sandler and Vivelo joined John Hopper, former President of the Fibrolamellar Cancer Foundation and current co-chairman of the NORD Rare Cancer Coalition, for a breakout discussion group to discuss progress made in rare cancers. Both the Fibrolamellar Cancer Foundation and the NORD Rare Cancer Coalition are MyPART advocacy partners. The discussion ranged from challenges with education and awareness about rare cancers across the healthcare community, to how adult and pediatric oncologists can better work together to advance potential therapies.
MyPART also hosted an exhibit booth in the NORD Patient Advocacy Pavilion, met with several different stakeholders in rare cancer research, and provided information on our Natural History Study of Rare Solid Tumors. The NORD Breakthrough Summit is a great opportunity to meet with rare cancer colleagues and MyPART looks forward to the next Breakthrough Summit!
On October 20-21st, MyPart co-sponsored an international workshop of rhabdomyosarcoma basic, translational, and clinical researchers, patients, and advocates. The workshop was hosted by MyPART advocacy partner, the Summer’s Way Foundation, which was founded to honor the memory of Summer Hammond, who lost her life to rhabdomyosarcoma and whose mantra “be strong, be positive, be better” set the tone for the workshop. Several NCI Center for Cancer Research investigators presented their work, including Pediatric Oncology Branch Investigator, Dr. Christine Heske, who discussed her efforts targeting NAD metabolism in rhabdomyosarcoma and Genetics Branch Deputy Chief, Dr. Javed Khan, who presented his work developing a CAR T cell therapy for rhabdomyosarcoma. Dr. Marielle Yohe, Lasker Clinical Research Scholar in the NCI CCR Laboratory of Cell and Developmental Signaling and POB adjunct investigator, served as co-chair of the meeting.
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We asked our MyPART team what they're thankful for this season. Read their responses below!
- Dr. Brigitte Widemann, MyPART Co-leader: I am thankful for my family (including cats), friends, colleagues and for every day!
- Dr. Abby Sandler, MyPART Executive Director: I’m thankful for the wonderful, dedicated MyPART team members who are so passionate about making progress for people facing a rare tumor diagnosis!
- Dr. Robin Lockridge, MyPART Clinical Psychologist: This year, I’m thankful for my family and friends, both old and new. The laughter and check-in calls always remind me of what’s important and I’m grateful for the enduring love and lessons that we share.
- Dr. Christina Vivelo, MyPART Communications Manager: I’m grateful for my growing family, including my two cats, and my thoughtful and inspiring MyPART team members who are committed to the patients and their families.
- Erika Kaschak, MyPART Post-bac Fellow: I am grateful for my family’s health, my PIs and all of the opportunities they have given me, my iCURE scholar network for always believing in me, and my MyPART family who continue to change the world one patient at a time.
- MyPART Research Nurse: I am thankful for happy times with family and friends, and I am thankful for a wonderful, fulfilling job with WONDERFUL colleagues.
- Dr. John Glod, MyPART Physician: My family, my work family, and coffee.
- Dr. Rosandra Kaplan, MyPART Physician: I am grateful for my health and for the knowledge that if I or my friends or family develop an unusual cancer, there are people working to help patients.
- MyPART physician, Dr. Juan Carlos Fierro Pineda (photo, right) attended the 16th American Association for Cancer Research (AACR) Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved. Dr. Fierro Pineda remarks, “The meeting was a notable event that brought together distinguished experts, researchers, and advocates from across the country to address a critical issue in healthcare. The conference provided a valuable forum for sharing the latest advancements in cancer research and discussing the disparities in cancer diagnosis, treatment, and outcomes, particularly among racial/ethnic minorities. It highlighted our challenges and significant progress in understanding, addressing, and ultimately reducing cancer health disparities.” Read this story about Dr. Fierro Pineda’s contribution to ensuring Gabriel, a young adult from Mexico, received the correct rare tumor diagnosis and life-saving treatment at the NIH Clinical Center.
- California Congressman Mark DeSaulnier, cancer survivor and co-chair of the Congressional Cancer Survivors Caucus, visited the NIH Clinical Center on October 20th and heard from MyPART's Dr. Abby Sandler and the NCI Office of Cancer Survivorship’s Drs. Emily Tonorezos and Michelle Mollica about research efforts in rare tumors and childhood cancers. Congressman DeSaulnier also toured the laboratory of Dr. Marston Linehan, Chief of NCI CCR’s Urologic Oncology Branch.
- NCI Director, Dr. Monica Bertagnolli, referenced MyPART’s efforts, specifically the rare tumor clinics, during the Senate HELP (Health, Education, Labor and Pensions) Committee Hearing for her nomination to the position of NIH Director on October 18th. View the clip and Dr. Bertagnolli’s comments here.
- The Desmoid Tumor Research Foundation (DTRF) has successfully advocated for the implementation of new ICD-10-CM diagnosis codes for desmoid tumors, which went into effect on October 1st, 2023. The new codes are a significant improvement from the previously assigned code, "Neoplasm of uncertain behavior of connective and other soft tissue," and indicate a diagnosis specifically for desmoid tumors, including tumor location. The new codes will improve the diagnosis process for patients and allow researchers to study "real world" data on desmoid tumors, accelerating our understanding of this rare tumor. Learn more about this advancement for desmoid tumors from DTRF here.
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