Teen Cancer America is an organization designed specifically to help healthcare providers and hospitals develop programs suited for adolescents and young adults (AYAs) with cancer. Founded by legendary musicians Roger Daltrey and Pete Townshend from the rock and roll band The Who, Teen Cancer America aims to improve the quality of life and survival of AYAs with cancer through specialized support services and clinical care. The organization helps hospitals and healthcare providers understand the unique needs of AYAs experiencing cancer by providing educational materials and guidance with the goal of creating sustainable and effective AYA programs in healthcare institutions.

The Teen Cancer America website offers links to educational, financial, lifestyle, and support resources specifically tailored to AYAs, and shares personal stories from AYAs with cancer and AYA cancer survivors. The website also has a health-professional specific section, which provides relevant information and resources for providers, including a monthly webinar called “The Monthly Drip”. Teen Cancer America also hosts programs and events to provide support and allow AYAs the opportunity to meet other AYAs going through a similar experience. In harmony with Teen Cancer America founders’ love for music, the organization’s Play It Back program matches AYAs experiencing cancer with music industry professionals who can help them express themselves through music.

MyPART welcomes Teen Cancer America as an advocacy partner with the shared mission of improving the lives of young people with cancer. Learn more about Teen Cancer America here.

Dr. John Glod, a physician-researcher for MyPART and the NCI CCR Pediatric Oncology Branch, joined The Life Raft Group’s GIST Awareness Day virtual event on July 13^th, 2022 to share updates in SDH-deficient GIST research. Gastrointestinal stromal tumor (GIST) is a type of digestive system tumor. In 5-7.5% of cases, GIST has mutations in the SDH gene, which codes for a protein that is important for making energy in the body. Called SDH-deficient GIST, this type of GIST is usually resistant to treatments for more common types of GIST. Most people with SDH-deficient GIST are children or young adults. Dr. Glod studies patients with SDH-deficient GIST through MyPART’s Natural History Study of Rare Solid Tumors and provided updates on his research to The Life Raft Group community during their annual GIST Awareness Day event. Dr. Glod was also joined by a pediatric GIST patient and advocate, Lleyton Schelesky, who shared his story. Lleyton was also a participant in the NIH Pediatric and Wildtype GIST Clinic, which brings expert physicians and researchers together with a group of GIST patients to provide treatment recommendations and discuss the latest in GIST research and treatment. For patients, this clinic also offers the opportunity to meet others who are experiencing the same diagnosis. The clinic is hosted in collaboration with The Life Raft Group. The next Pediatric and Wildtype GIST Clinic will be held September 14-16^th. The Life Raft Group is a MyPART advocacy partner. Learn more about GIST and The Life Raft Group here.   

• Brigitte Widemann, Chief of the NCI CCR Pediatric Oncology Branch (POB) and co-leader of MyPART, and Dr. Andrea Gross, POB physician-researcher, discuss their publication, “Selumetinib in Children with Neurofibromatosis Type 1 and Asymptomatic Inoperable Plexiform Neurofibroma at Risk for Developing Tumor-Related Morbidity” on Neuro-oncology: The Podcast. Selumetinib was approved by the Food and Drug Administration as the first treatment for inoperable plexiform neurofibromas (a type of rare nerve tumor) in children ages 2 years and older with Neurofibromatosis Type 1 in April 2020. Read more here.

• September 14-16^th: The Annual Pediatric and Wild-type GIST Clinic.The GIST Clinic will be held in hybrid format (both virtual and on campus at the NIH Clinical Center in Bethesda, Maryland). Learn more about the GIST Clinic and fill out an application here.
• The Pediatric and Young Adult Chordoma Clinic (date TBD in October 2022). The Chordoma Clinic will be held in hybrid format and will connect chordoma patients ages 39 years and younger with experts in chordoma from all over the country. The clinic offers patients an opportunity to receive treatment recommendations and gives chordoma experts an opportunity to discuss research findings and updates in chordoma treatment and care. More information about this upcoming clinic will be available soon. Learn more about the 2019 Chordoma Clinic here.
• October 17-18^th, 2022: National Organization for Rare Disorders (NORD) Breakthrough Summit. NORD’s Breakthrough Summit, held annually, brings together stakeholders in rare diseases, including patients, advocates, regulators, researchers, doctors, and more, to discuss important topics in rare disease research, treatment, and care. The event will be held in person this year. Learn more here.