Sarcomas are rare cancers that grow in the bone and soft tissues of the body, such as muscles, fat, and other connective tissue. Sarcomas make up about 1% of adult cancers and about 12% of pediatric cancers. The Sarcoma Coalition, established in 2018, is a collaboration between 23 sarcoma advocacy organizations across the United States with a common goal: provide research support and resources for the sarcoma community. The coalition believes that establishing a synergized partnership among advocacy organizations, though each organization may have a distinct sarcoma subtype focus, builds strength in numbers and together they can “leverage our [united voice and] collective strengths to make a greater impact in helping meet the needs of the sarcoma community.”

Working together, the Sarcoma Coalition advocates for educational programs about sarcoma, supports research, and strives to communicate the collective voice of sarcoma advocacy organizations. They also participate in the Golf Ball Project, an awareness campaign designed to alert health care providers less familiar with sarcomas that lumps around the size of a golf ball need further medical evaluation. Throughout the COVID-19 pandemic, the Sarcoma Coalition has advocated for the use of telemedicine to support patients who may be seeking second opinions and follow-up care. The coalition also provides educational webinars for the medical community that are CME-certified. Learn more about the Sarcoma Coalition here. Sign up for quarterly newsletters from the Sarcoma Coalition here.

The Pediatric Oncology Branch and MyPART leaders also have a long-standing interest in sarcomas in addition to a strong breadth and depth of clinical and research experience in sarcomas. The MyPART Network currently partners independently with 12 of the 23 advocacy groups making up the Sarcoma Coalition and shares the mission of raising awareness and overcoming the obstacles in rare cancer research and treatment. Read more about different sarcomas studied by MyPART here.

Dr. Abby Sandler is part of the leadership team of MyPART and serves as MyPART’s Executive Director. After growing up in New York and getting her BS in biology from Rensselaer Polytechnic Institute, she moved to Maryland to pursue her PhD in biology from Johns Hopkins University. After earning her doctoral degree, she continued her laboratory training in a post-doctoral position in the National Cancer Institute’s Intramural Research Program. However, she made the decision to leave the lab to pursue a position in research away from the bench. She explains, “I prefer to look at science with a very broad focus, rather than concentrate on a very specific question.”

Dr. Sandler became interested in rare tumor research after her daughter was diagnosed with neurofibromatosis type I (NF1) when she was 3 months old. NF1 is a genetic condition that can cause a variety of health conditions and leads to the growth of tumors along the nerves of the body. Her daughter’s NF1 led to a cancer diagnosis of malignant peripheral nerve sheath tumor (MPNST) just after her 18^th birthday. She says, “I’ve worked to channel my advocacy for her during her MPNST treatment (which was completed almost five years ago) into advocacy for all rare tumor patients.” Along with her background in basic research, Dr. Sandler brings her experience as the mother of an adolescent cancer survivor to MyPART.

In her leadership role with MyPART, she has created partnerships with almost 20 different rare tumor advocacy organizations. She also uses her perspective to enlighten researchers about the importance of patient-centered research. She explains, “I … help them understand why involving patients and advocates in research is so important. I feel that my scientific background and my own personal experience with my daughter’s cancer help me foster better connections between the research and advocacy communities.” She also leads MyPART’s communications efforts and facilitates the exchange of information and resources with advocacy organizations and their communities. When asked about her favorite part of MyPART, she says, “[T]he team! I feel so fortunate to work with such an incredible group of intelligent, dedicated, caring, and passionate individuals. I’m excited about the work we are doing and the progress we are making for patients and families facing a rare tumor diagnosis.”

Read more about the MyPART team here. 

• MyPART leader, Brigitte Widemann, discusses advancements in pediatric cancer research for the Healthcast podcast. Listen here.
• Dr. Robin Lockridge won the 2021 Federal Tech Transfer Award for her work on Patient Reported Outcomes and the Pediatric Oncology Branch Diversity Working Group. Read more about Dr. Lockridge and the importance of her work with PROs in the July 2020 issue of the MyPART Minute.
• Dr. Lori Wiener was a guest editor for a special issue on “Psychosocial considerations for children and adolescents living with rare diseases” in the journal Children.
• Dr. Margarita Raygada, researcher and genetic counselor for MyPART, spoke during the September 30 National Organization for Rare Disorders (NORD) Rare Cancer Day Webinar, “Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment and Research.”

• Oct 18-19: National Organization for Rare Disorders (NORD) Rare Summit – Members of the MyPART team will attend the virtual meeting and will offer information about MyPART and the Natural History Study of Rare Solid Tumors at the MyPART virtual exhibit booth.