MyPART Leaders, Drs. Abby Sandler, Karlyne Reilly, and Brigitte Widemann, served as Guest Editors for a special issue on rare tumors in the journal Current Problems in Cancer published in August 2021. The special issue kicks off with their editorial about the challenges of conducting research and clinical trials for rare tumors/cancers. After this overview of the state of rare tumor/cancer research, the issue delves deeper into specific examples of rare tumors of interest.

This special issue includes articles on the following rare tumors:

• Chordoma (MyPART physician Dr. Mary Frances Wedekind Malone co-authored this article)
• Inflammatory myofibroblastic tumor
• Rare kidney cancers
• Alveolar soft part sarcoma
• Fibrolamellar carcinoma
• Pediatric brain tumors

The issue also includes articles on engaging patients in rare cancer research (discussing sarcoma as an example) and the use of real-world data to obtain FDA approval of therapies for rare diseases (discussing plexiform neurofibromas in NF1 as an example). Contributing authors to this special issue include some of the physician-scientists and leaders in the field who collaborate with the MyPART Network.

The Summer’s Way Foundation is an advocacy organization dedicated to raising awareness for childhood cancer and supporting childhood cancer research. The organization was founded by Sharon and Sterling Hammond in memory of their daughter, Summer, who passed away from rhabdomyosarcoma. Summer’s Way coordinates support groups and offers resources for young patients, including funding  wigs for children and teens with hair loss from therapy.  Summer’s Way also hosts research workshops on rhabdomyosarcoma to bring researchers and clinicians together with patients and families impacted by rhabdo. The Summer’s Way website also features the stories of young people who have experienced rhabdomyosarcoma to share their journeys and inspire the effort to find new treatments for childhood cancer. The MyPART Network is pleased to partner with Summer’s Way and work together to improve the lives of young people with cancer.

Learn more about Summer’s Way here.

Shadin Ahmed is a post-baccalaureate fellow for MyPART. After graduating from William & Mary, she spent time working as a scribe in an emergency department. She worked as a scribe in the same emergency clinic as previous MyPART post-baccalaureate fellow, Maran Ilanchezhian, and learned about the MyPART program from him. She explains, “Because I hope to pursue a medical career in the future, I have always been interested in clinical research. The next obvious step felt like delving more into research and seeing the other side of medicine that is more behind the scenes.” After learning about the MyPART program from Maran, she says, “It seemed like it would be the perfect fit for me!” She applied for the position and joined the team in 2020.

As part of the MyPART team, Shadin works closely with clinicians and researchers to follow patients with rare tumors and learn about their long-term care. She explains, “My role includes weekly telehealth visits with the patients and going through records, while also analyzing their data and comparing results to find trends within our patient cohort. This contributes to the overall mission of the natural history study so that we can translate these findings to improve care for rare tumor patients.” Shadin also works with geneticists and psychologists to learn about other unique aspects of a patient’s care. She says, “Because of this, I feel like I have developed a very holistic view of working with cancer patients and all the dimensions of treatment.”

When asked about her favorite part of MyPART, Shadin exclaims, “The people! Since I started my role remotely, I didn’t know what to expect, but I have been amazed at what a great community this is to be a part of. Everyone on the team is so supportive and willing to help you learn and grow as a researcher. I love that I feel like a valued member of the team and that everyone has gone out of their way to make this the best experience even with the circumstances of the pandemic and remote work.”

Learn more about our MyPART team members here.

• September is Childhood Cancer Awareness Month – The Pediatric Oncology Branch will share resources and highlight our research to recognize Childhood Cancer Awareness Month. Follow us on Twitter: @NCI_CCR_PedOnc.
• Brigitte Widemann was featured in the NIH Intramural Blog, “I AM Intramural”
• Karlyne Reilly is an author of the recent publication, “Cancer Informatics for Cancer Centers: Scientific Drivers for Informatics, Data Science, and Care in Pediatric, Adolescent, and Young Adult Cancer,” published in JCO Cancer Clinical Informatics.
• Out now from the National Academies of Medicine: “The Road to Readiness: Guiding Families of Children and Adolescents with Serious Illness Toward Meaningful Advance Care Planning Discussions” by Dr. Lori Wiener and colleagues.