Volume 1 | September 7, 2022 | View in Browser
Our Community | Education | Programs | Research
How excited we are to have you read our first Connective Issue!  Our aim in this undertaking is to connect our community with each other regularly through our wins, needs, news, and common goal of Making it Better for kids suffering from osteosarcoma. You will find information and updates ranging from sharing open positions at institutions across the country, recent papers, open clinical trials, spotlight moments with OS people & labs, and a few MIB news bits too.  Thank you for reading, sharing, and contributing to this community.  Most of all, thanks for using your powers for good for kids with osteosarcoma!  
With Hope, 
The Beutlich family outrunning osteosarcoma together.
This September, join us for our Virtual OutRunning Osteosarcoma event! When you run/walk/cycle with us, you can help Cause A Cure. With MIB, no one walks through osteosarcoma alone.                                         
Raise awareness for Childhood Cancer Awareness month and show that you care with a beautiful gold bow for your mailbox or door. Your $25 donation will support osteosarcoma patient programs and research. To make or sell bows, contact        
We are thrilled to welcome four new members to our Scientific Advisory Board
Nicola Mason, BVetMD, PhD | University of Pennsylvania
Dr. Mason’s translational research focuses on developing safe and effective immunotherapies for dogs with cancer. Through comparative medicine, her work aims to accelerate the clinical implementation of effective immunotherapies into human clinics. Dr. Mason leads the first canine cancer immunotherapy consortium, supported by the Biden Cancer Moonshot initiative. She is the principal investigator of the national study, performed through the Comparative Oncology Trials Consortium, to evaluate the effects of a live, recombinant HER2 targeting Listeria vaccine in dogs with osteosarcoma.
Alex Huang, MD, PhD | UH Rainbow Babies and Children's Hospital/Case Western University
Dr. Huang is a pediatric oncology physician-scientist with an active basic and translational research program focused on cellular and molecular immunology and immuno-oncology. His lab's research has focused on defining vulnerabilities within the osteosarcoma tumor microenvironment that can be translated into clinical trials in the next few years. In addition to his professor appointments at Case Western, Dr. Huang is the Co-Leader of the Immune Oncology Program at the Case Comprehensive Cancer Center and is the Associate Director, Medical Scientist Training Program at Case Western University School of Medicine.
Alanna Church, MD | Boston Children's Hospital/Harvard Medical School 
An Associate Director of the Laboratory for Molecular Pediatric Pathology (LaMPP) at Boston Children’s Hospital, and an Assistant Professor at Harvard Medical School, Dr. Church has participated in several high-impact studies using molecular profiling for pediatric cancers, including the iCat study, Profile study, and the ongoing multi-institutional GAIN consortium study and the Count Me In study.  Her career is dedicated to implementing high-quality accessible molecular profiling tests to support the care of children with cancer.
Andy Livingston, MD, MS | MD Anderson Cancer Center
A clinician and researcher in sarcoma medical oncology with a joint appointment in pediatric oncology, Dr. Livingston has a particular interest in the care of teens and young adults with cancer and is Co-director of the MD Anderson Adolescent and Young Adult (AYA) oncology program. His clinical and translational research is focused on developing new treatment strategies for patients with osteosarcoma and other bone sarcomas.

The theme of Dr. Guenther’s research at St. Jude will center around the investigation of promising osteosarcoma dependency genes, including those involved in DNA damage repair. By understanding how these genes influence disease progression, she hopes to find ways to harness cancer cell vulnerabilities that will transform osteosarcoma treatment. 

Experience the magic of FACTOR where osteosarcoma researchers, clinicians, patients, and families gather to collaborate on a cure.
If you have a job posting and you would like it included here, please email
A virtual tumor review board for osteosarcoma, TURBO is open to clinicians or researchers with an interest in osteosarcoma.  Patients and families are welcome to ask their oncologists to present a case on their behalf.  Join TURBO to request an invite or submit a case.
Next meeting: September 14th at 5pm ET.
"The collaboration that we can achieve on a global scale will help physicians from across all disciplines more efficiently review cases, share available clinical trials and promote collaboration."

Matteo Trucco, MD | Cleveland Clinic | TURBO moderator
September 8 | Nathalie Gaspar 
A report on the phase I/II study of single-agent lenvatinib in children and adolescents with refractory or relapsed solid malignancies and young adults with osteosarcoma

September 15 | Nancy Klauber DeMore
Overcoming PD-1 Inhibitor Resistance with a Monoclonal Antibody to Secreted Frizzled-Related Protein 2 in Metastatic Osteosarcoma

September 22 | osTEAo AYA podcast
Our Junior Advisory Board members Camille, Mia, and Vicky spill the tea on dealing with osteosarcoma as an AYA.

October 6 | Sam Volchenboum
Transforming the Way Researchers Share Data: Lessons from the Pediatric Cancer Data Commons

See the 2022 OsteoBites Schedule and Subscribe 
The MIB Ambassador Agents program connects osteosarcoma patients and families to osteosarcoma survivors and their families.
In honor and memory of their children, Family Funds raise money to Make It Better for kids and young adults with Osteosarcoma. Their efforts fund desperately needed osteosarcoma research, educational resources, and programs that support kids and families in treatment.
Start a Fund
MIB Agents is offering two series of grief workshops this fall, led by grief counselor Lori Krause. Each series is free of charge to bereaved parents and includes six virtual group sessions plus a special session on coping during the holidays. 

Sign Up
Vactosertib trial not open yet, but currently accessible via compassionate use. Email at UH Rainbow Babies & Children's for more information.
If you have a trial that is currently enrolling osteosarcoma patients and you would like it included here, please email

Find More Trials
Thanks to our Family Funds and donors, we are funding $450,000 in osteosarcoma research in 2022 and supporting six researchers.
From left: John Ligon, MD, Dan Regan, DVM, PhD, Eunice Lopez-Fuentes, PhD, Michael Leibowitz, MD, PhD, Kristen VanHeyst, DO. Jason Yustein, MD, PhD not pictured.
  Learn more about our 2022 Outsmarting Osteosarcoma grant recipients
Enroll to accelerate osteosarcoma research by sharing your samples, clinical information, and your voice. Participants will be able to complete surveys, provide saliva and/or blood samples, and allow the study team to request copies of their medical records and optionally, stored tumor samples. In the near future, participants may be able to receive information about what the project has learned from their stored tumor samples and/or their germline (or "normal") DNA.  
Enroll in this Children's Oncology Group study at your institution to contribute FFPE tissue, frozen tissue and/or blood samples to the largest shared registry and biobank for childhood cancer. 
All MIB Agents programs are free of charge, thanks to generous donors who Make it Better.
Thank you to our partners BTG Specialty Pharmaceuticals and the Osteosarcoma Institute. 

BTG provides rescue medicines typically used in emergency rooms and intensive care units to treat patients for whom there are limited treatment options. They are dedicated to delivering quality medicines that make a real difference to patients and their families through the development, manufacture, and commercialization of pharmaceutical products. Their current portfolio of antidotes counteracts certain snake venoms and the toxicity associated with some heart and cancer medications. Their drug, Voraxaze, is for high-dose methotrexate toxicity.

Learn more about methotrexate.

Osteosarcoma Institute (OSI), a nonprofit organization led by osteosarcoma experts from top U.S. cancer centers who, together, are concentrating on the cure ® for osteosarcoma. The mission of the OSI is to dramatically increase treatment options and survival rates in osteosarcoma patients through identifying and funding the most promising and breakthrough osteosarcoma clinical trials and science. In addition to advancing research, OSI also provides a free resource called OSI Connect for osteosarcoma patients. Their osteosarcoma experts can discuss available treatments, possible side effects, and provide helpful advice for getting the most out of your visits with your treating physician. This resource is available in English and Spanish and aims to help patients and families find answers to their questions.

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