MyPART recently welcomed Let’s Cure ACC as a partner in rare cancer research and patient engagement. Let’s Cure ACC is an international community that provides information and resources to support patients with adrenocortical carcinoma (ACC), a rare cancer of the adrenal glands that affects about 1 person per 1 million per year. The organization offers detailed information about the disease, its treatments, and medical experts around the globe through their website. The Let's Cure ACC website is available in multiple languages to facilitate building an international ACC community. To foster hope and provide support for ACC patients who are sometimes isolated, their website highlights patient stories (in their original languages) and a list of relevant Facebook groups and other national organizations (by languages again) to offer ACC patients local resources. The association also provides updated information through its social networks: Facebook, Instagram and Twitter. MyPART is excited to welcome Let’s Cure ACC to its network of partners with the common goal of improving the lives of people with rare cancers.

Learn more about MyPART’s advocacy partners here.

Several fellows from the MyPART team are attending the annual American Society for Clinical Oncology (ASCO) meeting in Chicago, Illinois June 3-7^th. Post-baccalaureate fellows, Hannah Smith and Shadin Ahmed, will present their research findings during a poster session. They will also share basic information about MyPART with any attendees interested. After returning from ASCO, Hannah will only be with MyPART for a few more weeks before heading off to medical school! Good luck, Hannah!

• POB Research Roundup: On May 12^th, the NCI Pediatric Oncology Branch hosted its annual “Research Roundup” event, for the first time in-person (with a virtual option) since 2019. Senior fellows gave talks, and trainees presented posters about their research on childhood cancers. POB also welcomed Dr. Douglas Hawkins, Chair of the Children’s Oncology Group, as the keynote speaker. Dr. Xiyuan Zhang, from Dr. Jack Shern’s lab, won the Crystal Mackall Excellence in Research Award! We look forward to next year’s Research Roundup. Photo caption: Left to Right: POB Chief Dr. Brigitte Widemann with Crystal Mackall Excellence in Research Award nominees Drs. Taisuke Kondo, Ming Sun, Xiyuan Zhang, Liny John, and Miranda Clements, Keynote Speaker Dr. Douglas Hawkins, and POB Lasker Clinical Research Scholar Dr. Jack Shern. Masks were removed briefly for this photo.
• The NIH Clinical Center Treasure Tour App: an interactive virtual game that allows children and young adults to explore the NIH Clinical Center wins the National Association of Government Communications “Blue Pencil Gold Screen Award”. Dr. Lori Wiener, head of the POB Psychosocial Support and Research Program, played a role in the development of the app. Dr. Wiener also helped bring Wellness on Wheels to the NIH Clinical Center and attended the ribbon-cutting ceremony on May 5^th. Wellness on Wheels is a cart that provides comfort items to children and their families during their visit to the NIH Clinical Center. Learn more about the other resources and programs for patients and families, coordinated by Dr. Wiener and her team, here.
• Cancer Moonshot Seminar Series: Dr. Mary Frances Wedekind Malone, PI of the MyPART Natural History Study of Rare Solid Tumors, gave a talk about the study on May 26^th as part of the Cancer Moonshot Seminar Series session on “Advancing Patient Engagement and Implementation Science to Improve Cancer Care”. Dr. Wedekind Malone provided an overview of the study and how MyPART works to engage rare cancer patients and their families as partners in research.
• New Publication: “Psychosocial Characteristics and Experiences in Patients with Multiple Endocrine Neoplasia Type 2 (MEN2) and Medullary Thyroid Carcinoma (MTC),” by Dr. Lori Wiener and colleagues is out now in Children. Learn more about MTC here and learn more about Dr. Wiener’s psychosocial research program here.

• July 13: GIST Awareness Day. Gastrointestinal stromal tumor (GIST) is a tumor that grows in the digestive tract. In rare cases (5-7.5% of GIST cases), GIST is further classified as SDH-deficient GIST, meaning there are mutations in the genes coding for the protein succinate dehydrogenase. SDH-deficient GIST tumors don’t respond to the existing therapies used to treat the more common forms of GIST. Most people with SDH-deficient GIST are children and young adults. Learn more on our website here and from our advocacy partners at The Life Raft Group here.
• Sep 14-16: The 2022 Pediatric and Wild-type GIST Clinic. Learn more about the GIST Clinic and fill out an application here.