Due to the ongoing COVID-19 pandemic, the Chordoma Clinic has been postponed until Fall 2020. This would have been the second annual Chordoma Clinic, coordinated in collaboration with the Chordoma Foundation, to bring patients and families together with expert doctors and researchers. Our panel of experts will still meet virtually to discuss the latest research, future clinical trials, and urgent patient questions. We look forward to bringing patients, families, and experts to meet in person at the NIH Clinical Center for the rescheduled Chordoma Clinic in the fall.

MyPART is made up of a diverse team of researchers, genetic counselors, doctors, advocates and more. Also included on our team are post-bacs – trainees who have graduated from college and join the CCR Pediatric Oncology Branch (POB) as research fellows. Post-bacs help coordinate the rare tumor clinics, summarize patient medical records for POB staff, participate in clinical research studies, and draft publications.

Maran Ilanchezhian has been a post-bac with MyPART for almost 2 years. After graduating from the College of William and Mary with a bachelor’s degree in biology, he was intent on joining the NIH for a training program focused on pediatrics. He connected with Dr. Brigitte Widemann, Chief of the POB, and says “after learning about the rare tumor initiative during my interview, I knew this was where I wanted to be for the next two years!” Maran helps coordinate the rare tumor clinics, scribes during patient visits, and assists in clinical research. On scribing, Maran says he takes notes on patient medical history and other important information: “this allows the rest of the team to focus on providing care and recommendations to each patient.”

“My most meaningful project,” Maran says, “has to do with the findings of the annual GIST clinics. This clinic, which has gone on for over 10 years, led to the discovery of various molecular subtypes of GIST. These subtypes include the SDHC “epimutant” GIST population, a group that has no genetic mutation, but instead has tumors driven by an epigenetic change called hypermethylation. This subtype is so rare that we only have 27 patients who have been seen here at the NIH.”

He has spent the past year reviewing patient data to ultimately publish a detailed characterization of this rare tumor subtype. Maran also helps organize the annual Chordoma Clinic, which he describes as a very special experience: “It was amazing to hear the patients’ stories and meet them in person. Since many of our patients were pediatric [around the same age], we were also able to watch them get to know each other and become friends!”

When he’s not involved in important rare tumor research for MyPART, Maran enjoys travelling, hiking, and following DC sports. He also continues his passion for pediatric patient care by volunteering at Children’s National Medical Center in DC. When asked what’s next: “I will be pursuing a master’s in public health this summer!” We wish him luck in his future studies and will miss him as an important member of the MyPART Team.

The Life Raft Group supports patients and families diagnosed with a rare digestive system tumor called gastrointestinal stromal tumor or GIST. The Life Raft Group began in 2000 when a group of patients started sharing their experiences with their cancer diagnosis and treatment online. This group joined together formally in 2002 and has been growing ever since. The mission of the Life Raft Group is to improve the quality of life of GIST patients through patient-powered research, education and empowerment and global advocacy efforts.

They champion patient-powered science and drastically increase long-term survivorship for all cancer patients by:

• Leveraging the patient perspective to drive innovative solutions in cancer research
• Educating and empowering patients to take a larger role in their care
• Accelerating research outcomes through collaborative efforts
• Increasing access to effective treatments worldwide

Resources available include a Patient Resource Toolkit, a directory of GIST specialists, and the GIST Mentor Program. The Life Raft Group extends its reach to support international GIST patients as well and has helped establish a global virtual tumor board to review patient cases with a team of GIST experts.

Their commitment to “patient-powered research” led to their collaboration with the National Institutes of Health (NIH) to host the annual NIH Pediatric and Wildtype GIST Clinic – an opportunity for patients with GIST to visit the NIH Clinical Center and meet with expert doctors and researchers to receive treatment recommendations and support. Recently, the Life Raft Group published a white paper on the successes from the NIH Pediatric and Wildtype GIST Clinic, entitled: NIH Pediatric and Wildtype GIST Clinic: Partnership for Survival, demonstrating how it is essential to collaborate with patient advocacy groups for success in rare tumor research and treatment. Learn more about the support and services provided by the Life Raft Group here.

Next Advocacy Spotlight: Sara's Cure

Adolescent and Young Adult (AYA) Cancer Awareness Week is held each year during the first full week of April. Throughout the week, various AYA advocacy groups and AYA-focused medical programs highlight resources, host activities, and plan events for AYA Cancer patients and their families to connect across the country. This year, AYA Cancer Awareness Week will look a bit different and will practice social distancing due to the ongoing COVID-19 pandemic. However, several organizations will still host virtual events.

To recognize AYA Cancer Awareness Week, MyPART will be sharing AYA-focused resources each day on the main National Cancer Institute Instagram account each day from April 6^th through 10^th.  To learn more, connect with the other organizations participating in AYA Cancer Awareness Week: Teen Cancer America (@TeenCancerUSA), The Ulman Foundation (@UlmanFoundation), Stupid Cancer (@StupidCancer), Fort Worth AYA Oncology Coalition (@FWAYAOC), Dana Farber Young Adult Program (@DanaFarberYAP), Lacuna Loft (@LacunaLoft), Elephants and Tea (@ElephantsTea), First Descents (@FirstDescents), True North Treks (@TrueNorthTreks), and Epic Experience (@EpicXperience).