The Natural History Study of Rare Solid Tumors is a longitudinal, observational study seeking to enroll individuals with rare solid tumors, regardless of treatment plan or disease status. For some of our MyPART advocacy partners, it’s been helpful to host a meeting with MyPART doctor, Dr. Mary Frances Wedekind Malone, to explain the details of the study to their patients and families and how a particular rare tumor community may benefit from the study. MyPART advocacy partner, Fibrolamellar Cancer Foundation, invited several members of their community to a closed meeting with Dr. Wedekind and Dr. Abby Sandler on January 25, 2021 to engage their community and to learn more about the study (view a video recording of the virtual meeting here). We are also planning a similar meeting with MyPART advocacy partner, Sara’s Cure.  By participating in a meeting with us, advocacy partners have a chance to meet and learn from the lead doctor and scientists behind the natural history study and have their questions answered. Connect with us through email or by social media (Twitter: @NCI_CCR_PedOnc) if you’re interested in setting up a meeting with your community.

Dr. Christina Vivelo manages the communications for MyPART. She received her undergraduate degree in biochemistry from the University of Richmond and earned her Ph.D. from Johns Hopkins University Bloomberg School of Public Health. After finishing her doctoral degree, she began a fellowship in science communication through the National Cancer Institute, and she has stayed at the NCI ever since! “I knew after working in the laboratory,” she explains, “that I wanted to do something that was still very close to research and discovery but not at the bench. Working as the communications manager for MyPART, I have the opportunity to translate breakthroughs in research to the public.”

Effective science communication is vital for engaging patients in research, which is one of the main goals of MyPART. Without an understanding of how clinical studies are conducted or what they are studying, patients are less likely to want to participate. Science communication is also important for explaining why research is important. When people understand why research is important to understand disease and develop treatments, they are more likely to support scientific research. Effective science communication is also important when considering how to return research results to patients.

Dr. Vivelo manages the MyPART website and newsletter and runs the Twitter account for the Pediatric Oncology Branch. She uses different forms of media, including articles, infographics, and videos, to provide information about MyPART, explain the Natural History Study of Rare Solid Tumors, and highlight various aspects of rare tumor research. “We use different forms of media to communicate about MyPART and research because people digest information in different ways,” Dr. Vivelo says, “Some people prefer watching short videos and others may prefer reading an article.”

Along with MyPART Executive Director, Dr. Abby Sandler, Dr. Vivelo also connects with MyPART advocacy partners to ensure an exchange of information and resources between MyPART and their communities. When asked about her favorite part of MyPART, she explains, “Each member of the team brings a different experience and unique background to MyPART. I’m grateful to be part of a team where we are all able to use our unique talents to contribute to the shared mission of helping people with rare tumors and their families.”

Learn more about the MyPART team here.

• Selumetinib approved in Europe: Selumetinib was approved in the US in April 2020 as the first treatment for children ages 2 and older with neurofibromatosis type 1 and inoperable plexiform neurofibromas (rare nerve tumors). The drug gained approval in Europe in June 2021 for children ages 3 years and older.
• MyPART doctor, Dr. Jaydira Del Rivero was interviewed about carcinoid tumors during the virtual event: “Luncheon with the Experts” hosted by The Carcinoid Cancer Foundation.
• MyPART doctor, Dr. John Glod was awarded the NCI Center for Cancer Research Staff Scientist/Staff Clinician Research Award for “Early Detection of Cancer in Patients with Germline SDH Deficiency.”

• September is Childhood Cancer Awareness Month. Follow us on Twitter (@NCI_CCR_PedOnc) throughout the month as we share resources for patients and families and highlight our research.
• Sept 10-12th – Esophageal Cancer Action Network (ECAN) Conference, “A Path to Save Lives, A Virtual Collaborative Conference for All Stakeholders.” Members of the MyPART team will attend the virtual conference and host a virtual exhibit booth to provide information and resources about MyPART and the Natural History Study of Rare Solid Tumors.
• Sept 24th – Desmoid Tumor Research Foundation (DTRF) International Desmoid Tumor Research Workshop. Members of the MyPART team will attend the virtual workshop to learn about the latest advancements in desmoid tumor research and patient care.