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On January 30th, 2023, the MyPART team hosted its first in-person retreat since January 2020. Team members gathered to discuss program updates, brainstorm for the future, and engage in fun team building activities. The retreat included short talks and posters, breakout sessions, and keynote talks from Scientific Director of the NCI Childhood Cancer Data Initiative, Dr. Greg Reaman, and Senior Investigator in the NCI Developmental Therapeutics Clinic, Dr. Alice Chen. Learn more about MyPART here.
  Top Left: MyPART group photo. Top Right: MyPART leaders from left to right: Drs. Brigitte Widemann (Co-leader), Karlyne Reilly (Co-leader), Abby Sandler (Executive Director), Liny John (Physician), Mary Frances Wedekind Malone (PI of the Natural History Study of Rare Solid Tumors), Robin Lockridge (Psychologist), and Margarita Raygada (Genetic Counselor).
Bottom Left: Drs. Liny John and Mary Frances Wedekind Malone show off their paper airplanes before the game "Flight of the Manuscript". Bottom Middle: Dr. Taylor Sundby sends his paper airplane on a test flight. Bottom Right: Dr. Margarita Raygada celebrates the winning paper airplane made from the title page of one of her manuscripts.
- MyPART physician, Dr. John Glod, was quoted in a recent US News and World Report article about the December 2022 approval of the immunotherapy drug atezolizumab to treat children and adults with alveolar soft part sarcoma. About 40% of patients in the clinical trial that led to the approval of atezolizumab were treated at the NIH Clinical Center by doctors in the NCI Pediatric Oncology Branch (POB) and their collaborators in the NCI Developmental Therapeutics Clinic, including Dr. Alice Chen. Read the article here.
- On January 6th, 2023, POB Lasker Clinical Research Scholar, Dr. Jack Shern, participated in a congressional briefing about neurofibromatosis type 1 (NF1). This genetic condition can lead to the development of nerve tumors throughout the body. The briefing was hosted by the Littlest Tumor Foundation. Dr. Shern’s research investigates how to use liquid biopsies and sequencing techniques to detect the development of tumors in NF1 patients earlier, which may inform treatment and lead to better outcomes. Learn more about Dr. Shern’s work here.
- Recording available for the Childhood Cancer Data Initiative (CCDI) Rare Cancer Workshop, held November 18th, 2022. Read summaries of each of the presentation sessions and view a video of the entire workshop here. Important topics from this workshop will be discussed at the CCDI Annual Symposium, happening on March 24, 2023 both virtually and on the NIH Main Campus in Bethesda, MD. Register to participate in the Annual Symposium here and view the agenda here. Learn more about the CCDI here.
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Feb 3rd: National Women Physicians Day. National Women Physicians Day honors women physicians in science and healthcare. We thank our POB and MyPART women physicians for their dedication to patient care and childhood cancer research!
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Feb 6th: International Chondrosarcoma Awareness Day. International Chondrosarcoma Awareness Day. February 6thwas designated International Chondrosarcoma Awareness Day by the Chondrosarcoma Foundation in honor of Shayna Elise Kramer, who passed away from this rare tumor in 2019. People are asked to post photos of themselves wearing yellow ribbons on social media with the hashtag “#cswecare” to raise awareness about chondrosarcoma and share information and resources. Learn more about chondrosarcoma here.
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Feb 25th: Olfactory Neuroblastoma (ONB) Patient Education Meeting. MyPART collaborator and physician scientist, Nyall London, hosts an annual patient education meeting about ONB, a rare tumor that grows in the nasal cavity. Learn more about this virtual event, which will be held from 10am to 1pm ET, here. Learn more about ONB here.
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Feb 28th: NIH Rare Disease Day. This annual event hosted by the National Center for Advancing Translational Sciences and the NIH Clinical Center raises awareness and shares the latest in rare disease research. This year, MyPART Executive Director, Dr. Abby Sandler, will host a panel entitled, “Meeting the Needs of Adolescent and Young Adult (AYA) Rare Disease Patients.” MyPART Psychologist Dr. Lori Wiener will participate, along with representatives from two MyPART advocacy partners, Stupid Cancer and Teen Cancer America. The event will be hybrid, with participants having the option to attend in person or watch the live stream here. Register and learn more about the event here.
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