AYA Sarcoma Newsletter

Welcome to the first seasonal newsletter from
Dana-Farber's Adolescent and Young Adult (AYA) Sarcoma Program.

In each issue, we’ll share updates about care, support services, new research, and ways we are building a strong AYA sarcoma community.

Dr. George is a Senior Physician at Dana-Farber and a Professor of Medicine at Harvard Medical School. Her work over multiple decades has focused on bringing novel targeted treatments to patients with sarcomas through patient-centered research. Dr. George has made a particularly large impact in the development of new treatment strategies for patients with a type of sarcoma called gastrointestinal stromal tumor (GIST).

Dr. Shulman leads our Adolescent and Young Adult Sarcoma Program, which he created with Dr. George in 2022. He is an Assistant Professor of Pediatrics at Harvard Medical School, and his clinical work and research focus on adolescents and young adults with sarcomas. Dr. Shulman runs clinical studies designed to bring new treatments and new biomarkers (such as liquid biopsy) to adolescents and young adults with sarcomas.

Liz has a background in social work and global health and is the program manager for Dana Farber's AYA Sarcoma Program. She leads efforts to strengthen patient engagement, expand program outreach, and support research across the program (read more about Liz and her role below).

Most people have not heard of sarcomas until it affects them or a loved one. These rare and life-threatening tumors arise at a time when young adults are beginning their independent lives. They may be preparing to leave for college, starting their first job, becoming newly engaged, or starting a family of their own. A season of life that is already complex at baseline is now thrown into a tailspin.

For example, a person diagnosed with Ewing sarcoma, a cancer that commonly affects AYAs, faces a long treatment journey that includes 50 or more infusion visits, major surgery and/or radiation, and frequent hospital admissions. Patients are pulled away from school, work, and their peers, and suddenly engulfed in medical appointments. Treatment then becomes life, and for many is profoundly isolating.

In 2021, I joined the sarcoma clinic with the goal of bridging adult medical oncology and pediatric oncology to focus on improving care for this group of patients. I’ve had the good fortune to work under Dr. Suzanne George, who has long recognized this specific population is a group in need of more comprehensive clinical care and more research. Shortly thereafter, we came together to develop Dana-Farber's AYA Sarcoma Program, dedicated to transforming the care we provide AYAs with sarcomas.

We initially hired a part-time program manager who was instrumental in launching the program and helping us conduct an initial series of focus groups to better understand patient needs. With funding from a generous donor, we met with 20 AYAs. We heard repeatedly that treatment dramatically impacted a person's independence and life milestones, and that patients needed more resources.

In 2025, Liz Marconi was working at Connecticut Children’s as a social worker with, among others, a Dana-Farber-trained pediatric oncologist, Dr. Natasha Frederick. She spent eight years caring for children and young adults with advanced solid tumors and was ready for a new challenge. Liz applied for the newly posted full-time AYA Sarcoma Program Manager position at Dana-Farber and was an easy choice given her strong clinical background and leadership skills. Within weeks, Liz was a familiar face in the Yawkey 6 sarcoma outpatient clinic.

Today, Liz screens new patients under age 40 who come to our sarcoma clinic. She engages all new patients and orients them to the dedicated AYA resources we have at Dana-Farber. Liz meets patients in clinic and follows them throughout their treatment course, helping them navigate the complex road ahead. She also helps ensure that patients have early access to key resources, such as psychosocial care, financial resources, and relationship and sexual health resources.

In parallel, our program recognizes that new research will be key to improving outcomes for patients with these rare, devastating diseases. Dana-Farber is unique in the depth and breadth of available studies, with over 1,000 clinical trials. For AYAs, navigating these studies can be a challenge, as some are only available in pediatric oncology, while others are limited to medical oncology. Liz now tracks study participation and is working to make the program a platform for innovative research.

As Liz oversees the next phases of growth of our AYA program, she will help build resources for patients completing therapy and support broad access to our growing portfolio of clinical trials and research studies. Most mornings, you can find Liz in our clinic workroom, scanning the day’s schedule and making sure no patient walks this road alone.

This virtual drop-in support group is open to any young adult (ages 18-39) diagnosed with a desmoid tumor.

The group is held the fourth Wednesday of every month from 6:30-7:30 p.m. ET on Zoom.

Our virtual support group is facilitated by Caitlin McDonough, LICSW.

Caitlin is also available for individual social work support for young adults living with sarcoma. 

Research by Vinayak Venkataraman, MD, in the Journal of Adolescent and Young Adult Oncology confirms that sarcoma and its treatment affect adolescent and young adult patients’ physical, emotional, social, and economic well-being. The study also suggests that earlier introduction of support services may help address some of these challenges.

You're invited to join our Jimmy Fund Walk team!

Together with staff, patients, families, and friends, we're aiming to raise funds directly for our Sarcoma Program!

Participants can choose from four routes: 5K, 10K, half marathon, or the full 26.2-mile marathon distance.

October 4, 2026 

Register below and use our discount code: DFCI