The MyPART website, which currently receives about 70,000 unique visitors per month, will be launching a Spanish version this summer! Most visitors to the MyPART website are currently from three English-speaking countries: the US, UK, and Canada. The most visited pages on the MyPART website are the rare tumor pages, which provide basic information about a variety of different rare solid tumors. With the launch of a Spanish translation of most of the MyPART website, we aim to make rare solid tumor information and resources accessible to the Spanish-speaking community.
Stay tuned for the launch of the Spanish MyPART website in early August!
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The MyPART team and their collaborators have published two papers in the journal, Pediatric Blood and Cancer. One paper, entitled “NCI intramural program approach to rare tumors: Natural history study of rare solid tumors in children and adults: A longitudinal, comprehensive data and biospecimen collection protocol,” provides a deep dive into the aims of MyPART and the Natural History Study of Solid Tumors protocol. The paper also emphasizes the importance of collaboration across the rare tumor community to make progress. Read the full publication here.
The second paper, “The NIH pediatric/young adult chordoma clinic and natural history study: Making advances in a very rare tumor,” highlights recent findings from the MyPART Pediatric Chordoma Clinic, including clinical presentation, pathology, data collected throughout the clinic, and treatment recommendations offered to patients. The paper concludes that the clinic model, which includes a multidisciplinary care team, is an effective way to better understand pediatric chordoma. The paper also outlines the unmet needs of this rare patient population and provides a recent review of the literature on pediatric chordoma. Read the full publication here.
Read summaries about previous publications from the MyPART team here.
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- Several MyPART team members attended the recent Childhood Cancer Foundation (CCF) 7th Annual Research Symposium, held June 14th in Greenbelt, MD. The symposium included presenters from local research institutions focused on childhood cancer research. MyPART physician Dr. Taylor Sundby presented a talk on using liquid biopsies to determine the biology of NF1-associated nerve tumors. Shadin Ahmed and Dr. Christina Vivelo presented posters. Learn more about the CCF Annual Research Symposium here.
- MyPART psychologist and head of the Pediatric Oncology Branch’s Psychosocial Support and Research Program, Dr. Lori Wiener, attended the 5th Global Adolescent and Young Adult Cancer Congress, hosted by Teen Cancer America, Canteen Australia, and Teenage Cancer Trust on June 20-23 in Long Beach, CA. Dr. Wiener participated in the panel “Delivering What Matters (Better): New Models and Innovative Approaches to Improve Cancer Care for Adolescents and Young Adults.” Learn more about Dr. Wiener and her work here.
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Pediatric Oncology Branch investigator Dr. Troy McEachron attended the MIB Agents FACTOR Osteosarcoma Conference June 22-24, in Atlanta, GA and moderated the panel “Biomarkers for Risk Stratification.” MIB Agents is a non-profit organization dedicated to improving the lives of pediatric osteosarcoma patients and their families. MyPART welcomed MIB Agents as an advocacy partner in May 2023. Learn more about MIB Agents here.
- Members of the MyPART team attended the Children’s Tumor Foundation NF Conference June 24-27 in Scottsdale, AZ. MyPART physician Dr. Taylor Sundby presented his work on liquid biopsies to determine the biology of NF1-associated nerve tumors.
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 MyPART team members and POB colleagues attend the Children's Tumor Foundation Neurofibromatosis Conference in Scottsdale, Arizona, June 24-27.
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July 13th: GIST Awareness Day. Gastrointestinal stromal tumor, or GIST, is a type of rare digestive system tumor. Each year, GIST Awareness Day is celebrated globally to bring awareness to this rare tumor and advocate for a cure. This year, The Life Raft Group, a leading advocacy organization in the GIST community and a MyPART partner, is hosting a webinar highlighting GIST research updates featuring MyPART physician Dr. John Glod on July 13th at 12pm ET. Dr. Glod studies GIST tumors that are deficient in the gene SDH, called SDH-deficient GIST. SDH-deficient GIST is a rare type of GIST, making up only 5% to 7.5% of all GIST cases, and does not respond to treatments for more common types of GIST. Register for the free webinar here. MyPART studies GIST through our Natural History Study of Rare Solid Tumors.
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July 15th: Leiomyosarcoma Awareness Day. Leiomyosarcoma is a rare soft tissue tumor that grows in the smooth muscle tissue throughout the body. MyPART currently partners with two advocacy organizations dedicated to leiomyosarcoma: The Leiomyosarcoma Support & Direct Research Foundation and the National Leiomyosarcoma Foundation. MyPART studies leiomyosarcoma through our Natural History Study of Rare Solid Tumors.
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July 18-21st: Animal Models of Cancer Conference in Portugal. MyPART scientist, Dr. Francesco Tomassoni Ardori, will present his work on modelling gastrointestinal stromal tumors (GIST) in the mouse. The conference is co-chaired by Dr. Kevin Haigis from Dana Farber and Dr. Julien Sage from Stanford. Learn more about the conference here.
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September 21-22nd: MyPART is a co-sponsor for the TFE/Translocation Renal Cell Carcinoma Symposium that will be held in Cincinnati, OH. The symposium will be chaired by Dr. James Geller from Cincinnati Children’s Hospital Medical Center, along with Drs. Marston Linehan and Ramaprasad Srinivasan from the Urologic Oncology Branch in NCI’s Center for Cancer Research. For more information, please contact Dr. Geller at James.Geller@cchmc.org or register for the symposium here.
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