Rein in Sarcoma Remembers

On Saturday, November 2, a group gathered at the Carl W. Kroening Interpretive Center in Minneapolis to honor the memories of their loved ones lost to sarcoma and to receive friendship and support. Christy Moe Marek, End of Life Doula, shared her story and guided the group through a meditation to ground oneself and connect with the earth. She offered a helpful list of things we can do to “work with darkness and light.” The event concluded with a naturalist led walk along the bank of the Mississippi River, on trails covered with fallen leaves and a light dusting of snow.

Thanks to those who participated and to the Patient and Family Support committee members who planned this hopeful gathering.

Christy Moe Marek
End of Life Doula

“Sarcoma: A Rare and Deadly Cancer” produced to Educate Medical Professionals

RIS is pleased to make available a major new video: “Sarcoma: A Rare and Deadly Cancer” – a conversation between a patient and her doctor.

The RIS Medical Advisory Board and the Red Flags Education Committee are excited to introduce an important new video designed to educate a variety of audiences about Sarcoma. Dr. Emily Greengard, Pediatric Oncologist at the Masonic Children’s Hospital and member of our Medical Advisory Board, along with her patient, Sarina Morrison, engage in warm and personal educational conversation in this 25-minute video produced for RIS by Jeff Fuchs of Northern Lights Video.

The video is primarily intended for those who may be the first to see a patient with a sarcoma, to introduce them to the warning signs and proper next steps. Find out why Sarina now says in retrospect that her “sarcoma diagnosis was a major blessing, however, at the time, it was a major inconvenience.” Early diagnosis and proper treatment saves lives. The two-minute intro video is below – view the full video on the RIS YouTube Channel.

We encourage use of the video by School Nurses, Athletic Trainers, Chiropractors, Physicians Assistants, Physical Therapists, Medical Students and Residents, Family Practice Doctors, and Pediatricians, in workshops and staff meetings to learn about sarcoma and save lives. The video is also appropriate for use in public settings such as PTA’s, Church Classes, Rotary Clubs etc. to alert people to the signs and symptoms of a rare disease in a very personal manner. Accompanying print materials, including additional education resources and course objectives, are also available by contacting Rein in Sarcoma at (763) 205-1467 or by email.

New Sarcoma Research Grants Announced

Children's Minnesota

Rein in Sarcoma awarded Children's Minnesota a grant of $20,000 for “Expanding Opportunities For Early Detection of Sarcoma”

Co-Principal Investigators: Megan Hilgers, MD, pediatric oncologist and Kris Ann P. Schultz, MD, pediatric oncologist

Lay Summary:
Liquid biopsies are a promising technique to facilitate tumor monitoring and, in certain clinical circumstances, early detection. In this application, we propose to build on our existing ctDNA work in DICER1-related tumors and expand ctDNA research at Children’s Minnesota to include non-DICER1 related sarcomas including Ewing’s sarcoma, osteosarcoma and the variety of aggressive tumors including sarcomas which are seen at high frequency in children and adults with Li Fraumeni syndrome.

Funding from Rein in Sarcoma will: 1) Facilitate our participation as founding members of the Early Detection of Inherited and SecondarY Neoplasms (EDISYN) Consortium; and 2) Allow us to open a trial to assess the impact of ctDNA levels on survival in children with Ewings Sarcoma and osteosarcoma. Both of these projects leverage the clinical strengths of Children’s Minnesota and our existing DICER1related ctDNA research with existing laboratory expertise outside of Minnesota to more expeditiously bring ctDNA-related studies to children with sarcoma in Minnesota and worldwide

Mayo Clinic

Rein in Sarcoma is awarding Mayo Clinic a grant of $25,000 for “Integrated Proteomic and Transcriptomic Profiling of Rhabdomyosarcoma Reveals Target Antigens for Immune-Based Therapies”

Principal Investigator: Patricio Gargollo, MD, Associate Professor in Urology
Co-Principal Investigators: Dr. Carola Arndt, MD, Professor of Pediatrics, Dr. Candace Granberg, MD, Assistant Professor of Urology, Dr. Haidong Dong, MD, PhD, Professor of Immunology, Dr. Fabrice Lucien-Matteoni, PhD, Senior Research Fellow in Urology

Lay Summary:
Rhabdomyosarcoma (RMS) is the most common soft tissue tumor in children, with nearly 20% of children presenting with locally aggressive and/or metastatic disease. A fundamental problem with this disease is the lack of effective and tolerable therapeutic regimens. Current protocols including surgery, radiotherapy and chemotherapy are extremely toxic and may lead to multiple deleterious long-term effects. Moreover, a significant percentage of patients tends to relapse and for those patients, life-expectancy is less than 5 years. Our group is dedicated to uncover molecules at surface of tumor cells aberrantly expressed in RMS. The biggest benefit of our approach is that cell-surface proteins are easily accessible for pharmacological intervention as cell surface is an effective barrier for the entry of therapeutic drugs. Our first objective is to analyze the repertoire of cell-surface molecules in RMS tumors and compare with normal muscle to identify potential targetable vulnerabilities. We will examine the functional impact of the expression of RMS-specific molecules on tumor growth using patient-derived RMS cells.

This proposal will lay the foundation for our next short-term goal which will be to design new therapeutic strategies to target RMS-specific molecules and evaluate their clinical potential for the treatment of pediatric RMS. Ultimately, our study will expand the therapeutic landscape of children diagnosed with RMS by improving patient response to treatment, increasing their survival rate and reducing treatment-related toxicities. Finally, our successful approach will be suitable to overcome similar challenges in other types of sarcoma very aggressive in children such as osteosarcoma and Ewing sarcoma.

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