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Adolescent and young adult osteosarcoma survivors associated with the advocacy organization MIB Agents visited the NIH Clinical Center on March 15th, 2024 to share their perspectives, meet with researchers, and tour the labs of NCI Center for Cancer Research (CCR) Principal Investigators conducting osteosarcoma research. The group of young adult advocates, formally known as the Junior Advisory Board of MIB Agents, were able to connect with researchers and trainees in a small discussion, then tour the labs of Pediatric Oncology Branch investigators, Dr. Troy McEachron and Dr. Rosie Kaplan, who each lead research programs studying osteosarcoma. Ann Graham, Executive Director and Founder of MIB Agents, also attended the visit. The opportunity to bring patients and advocates together with researchers is paramount to making progress in rare cancers and identifying research priorities. MIB Agents is also a MyPART advocacy partner. POB looks forward to the next visit from cancer advocates!
 Members of the MIB Agents Junior Advisory Board, along with MIB agents Executive Director and Founder Ann Graham, visit the NIH Clinical Center in Bethesda, MD to meet with NCI CCR Pediatric Oncology Branch researchers and tour labs conducting osteosarcoma research.
- MyPART physician Dr. John Glod was featured in the NCI Center for Cancer Research (CCR) annual Milestones magazine, which describes CCR’s top research accomplishments from the past year. Dr. Glod was highlighted for his role in a clinical trial for alveolar soft part sarcoma (ASPS), a rare tumor in the soft tissue of the body that is most commonly found in young adults. Dr. Glod cared for the pediatric patients enrolled in the trial, which led to the first FDA approved treatment of atezolizumab for ASPS in people aged 2 years and older. Read more here.
- MyPART physician, Dr. Taylor Sundby, has been selected as a 2024 Make NF Visible Researcher Award winner, presented by the Children’s Tumor Foundation. Dr. Sundby is recognized for his research contributions to the neurofibromatosis (NF) community and the award will be presented at the NF SUMMIT in San Antonio, TX on April 14th.
- MyPART Psychologist and Head of POB’s Psychosocial Support and Research Program, Dr. Lori Wiener, receives the 2024 Jimmie Holland Lifetime Achievement Award from the American Psychosocial Oncology Society (APOS). The award, the highest honor from APOS, celebrates a member of APOS who has been both a leader in the field and a steward of patient-centered care. Dr. Lori Wiener was also selected as a steering member on the Pediatric Psycho-Oncology Network (PPO) of the International Society of Paediatric Oncology (SIOP).
- April is Epithelioid Hemangioendothelioma (EHE) Awareness Month! MyPART advocacy partner, EHE Foundation, will host its annual virtual EHE Fun Run and Walk throughout the month of April and its virtual global patient conference, EHE 360, on April 19th. Learn more about EHE and find resources from EHE Foundation here.
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April 1-5th: National Adolescents and Young Adults (AYA) Cancer Awareness Week. Each year, about 86,000 adolescents and young adults will be diagnosed with cancer and face unique challenges. Throughout the first week of April, we share resources and spread awareness for this group of young people experiencing cancer. Learn more about AYAs with cancer here.
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April 5-10th: American Association for Cancer Research (AACR) Annual Meeting in San Diego, CA. MyPART co-leader and Chief of the Pediatric Oncology Branch, Dr. Brigitte Widemann, will be speaking during an NCI special session on the NCI Childhood Cancer Data Initiative, scheduled for April 9th.
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April 25th: NCI Cancer MoonshotSM Seminar Featuring MyPART Researcher Dr. Francesco Tomassoni Ardori. The seminar, which will be held virtually from 12-1pm ET, will address the theme of “Implementation Science and Patient Engagement Approaches to Improve the Early Detection and Treatment of Cancer.” Register for the virtual event here.
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May 13th: Public Workshop, “Natural History Studies and Registries in the Development of Rare Disease Treatments.” The workshop, which will be held virtually and in person at the U.S. Food and Drug Administration (FDA) White Oak campus, will be held from 10am-4pm ET and is a collaboration between FDA, the National Center for Advancing Translational Sciences (NCATS), and the Reagan-Udall Foundation for the FDA. Learn more and register for the event here.
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Save the date! Upcoming Rare Tumor Clinics in 2024 at the NIH Clinical Center:
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Chordoma Clinic: May 8-9, 2024. For questions about this clinic, please email NCICCRRareTumorClinic@mail.nih.gov.
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Pediatric and Wild-type GIST Clinic: June 12-13, 2024. Applications for the GIST Clinic are now open! Learn more about the clinic and apply here.
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