• Olfactory neuroblastoma (ONB) webinar videos from Dr. Nyall London’s Community Conference Series can be viewed on the olfactory neuroblastoma web page. These videos explain the latest ONB research, diagnosis, and treatment and provide helpful information for ONB patients about cancer survivorship.
• The NIH Pediatric and Wild Type GIST Clinic application for the 2022 GIST Clinic is now open. The clinic will be held September 14-16^th at the NIH Clinical Center in Bethesda, Maryland.
• “Transitioning to Adult Care for NF Patients” from the NF Collective can be found under “Related Resources” on the Support for Patients and Caregivers web page. This resource provides action steps for patients ages 11 through 21+ years old and their caregivers.

MyPART advocacy partner the Clear Cell Sarcoma Foundation (CCSF), formerly known as Sara’s Cure, is a non-profit organization based in Charleston, South Carolina with the mission of increasing survivorship and spreading awareness about clear cell sarcoma. Clear cell sarcoma is a rare form of sarcoma that usually affects teens and young adults and has no standardized treatment. CCSF works to connect clear cell sarcoma patients and ensure their voices are heard. CCSF also supports scientific research and is working toward obtaining an ICD (International Classification of Diseases) code for clear cell sarcoma, establishing clear cell sarcoma as a distinct type of sarcoma. On their website, CCSF provides information for patients who are newly diagnosed to help educate patients and inform them of clinical trials. CCSF also provides information for physicians to advance the knowledge of clear cell sarcoma in the healthcare community. “We all need to work together to find treatments for clear cell sarcoma, and we believe that partnering with other organizations such as MyPART with the common goal of improving outcomes for patients with rare tumors, including clear cell sarcoma, will help us reach these goals,” says Lennie Woods, CCSF Executive Director and Co-Founder.

Learn more about the Clear Cell Sarcoma Foundation here.

Julianne Schultz is a post-baccalaureate fellow for MyPART. She works with MyPART doctors and nurses to coordinate the Natural History of Rare Solid Tumors, “reviewing medical records, writing patient summaries, completing medical extraction forms, recording minutes of meetings, analyzing data, coordinating specialty rare tumor clinics, and attending telehealth visits,” she says.

Like many of our MyPART team members, Julianne has a personal connection to cancer research. She explains, “Following my graduation in May 2020, my dad was diagnosed with advanced renal cell carcinoma. While intimately working with him as a caregiver, I have struggled to understand so many aspects of his debilitating, yet all-too-common, disease. It is these unanswered questions that fueled my interest in working at the NCI, where I have the opportunity to use my personal experience to help navigate patients and their loved ones every step of the way in their fight against cancer.”

Julianne graduated from the University of Virginia with a Bachelor of Arts degree in cognitive science with a concentration in neuroscience. During her time at the University of Virginia, Julianne’s brother was in a car accident that left him suffering with a traumatic brain injury. This tragic experience ignited Julianne’s passion for medicine. She explains, “This passion led me on a journey from working as an emergency department medical scribe, to serving as President of the American Red Cross Club, to conducting research in the Department of Neurosurgery.” She now joins the MyPART team and contributes her unique skills and experience.

Julianne’s favorite part of being in MyPART “is listening to patient’s stories. The MyPART network fosters a diverse and inclusive environment that encourages patients to share their unique stories. Through actively listening to our patients, we gain an intimate view into their emotions, needs, and values. This valuable insight provided by personal narratives is leveraged to further our understanding of rare cancers while also enabling us to engage patients as partners in their health.”

Learn more about the MyPART team here.

• Jan 28^th: Anniversary of Opening Enrollment for the Natural History Study of Rare Solid Tumors. Three years ago, MyPART opened the Natural History Study of Rare Solid Tumors for enrollment. The study has grown to include over 400 study participants and includes over 50 different rare tumor histologies. Stay tuned for a special video highlighting the study, MyPART, and most importantly, our patients.
• Feb 3^rd: National Women Physicians Day. MyPART celebrates our women physicians and recognizes their hard work and dedication to our rare tumor patients and rare cancer research.
• Feb 28^th: Rare Disease Day at NIH. The event will be virtual again this year. Access the agenda and register for the event here.