Volume 20 | April 3, 2024
Having just returned from Washington DC where I witnessed true superheroes in action - our Junior Advisory Board (JAB) pushing for progress on Capitol Hill and representing patient voice at the NCI and White House, I am energized by the common bond our community shares. Not only are we bonded by our shared passion to Make It Better for osteosarcoma patients, but we do so selflessly and collaboratively. We highlight some examples in this issue:
- JAB member Gillian Okimoto pens an opinion piece in Newsweek on the challenges of gathering data to propel scientific advances in rare diseases like osteosarcoma.
- The scientific community is working hard to solve this! Read more in this issue about efforts from the NCI C3DC and the Osteosarcoma Explorer to create data commons to accelerate discovery.
- Six years NED, the Bisaga family still works to make it better for osteosarcoma patients by actively participating in both the MIB JAB and Family Funds.
- SARC is developing the Sarcoma Centers Registry to support sarcoma patient decision-making and provide a much needed resource for sarcoma patients, caregivers, and clinical communities across the globe.
There is no better place than our annual FACTOR osteosarcoma conference, June 20-22 in Cleveland, to see and join in this selfless collaboration to Make It Better with 50+ scientific speakers, Warrior HQ, wellness sessions, and in-person Healing Hearts and Ambassador Agents training. Register to attend. You belong there.
With hope,
Ann
PS - We cannot continue without your support. Your donation is needed and matters.
%20(28).png)
The MIB Agents Junior Advisory Board (JAB) traveled to Washington DC last month to speak with the Biden Cancer Moonshot team at The White House, visit with Senatorial Staff at The Capitol, and present a Patient Panel to the National Cancer Institute (NCI), The National Institutes of Health's Pediatric Oncology Branch. We are so proud of our JAB members who shared their stories with honesty and kindness. This trip was possible thanks to the support of the Scott Carter Foundation. Additionally, thanks to Nancy Goodman at KIDS V CANCER, Troy McEachron, PhD, and Lori Wiener, PhD, LCSW-C, Brigitte Widemann, MD, Rosandra Kaplan, MD, Jackson Frost and Catharine Young, PhD.
.jpeg)
Andrew Bisaga is an OsteoWarrior and member of the MIB Agents Junior Advisory Board, and his mom Mary is a member of the MIB Agents Family Fund Advisory Council. We asked the Bisagas to share their osteosarcoma story, advice they have for newly diagnosed families, and what inspired them to start a Family Fund Because of Andrew.
Read more about the Bisaga Family
If you have a job posting and you would like it included here, please email christina@mibagents.org.
.png)
.png)
.png)
Watch Past Episodes and See the Upcoming Schedule
SARC was founded to facilitate collaboration among leading cancer centers, researchers, and clinicians – all dedicated to a coordinated and strategic approach to finding a cure for ALL sarcoma types. SARC is developing the Sarcoma Centers Registry to support sarcoma patient decision-making and provide a much needed resource for sarcoma patients, caregivers, and clinical communities across the globe. All centers included in the Registry must meet objective, qualifying criteria.
Apply to Join the Sarcoma Registry
.jpg)
We are delighted to announce that Ambassador Agent Training will take place live at FACTOR in the Hotel Cleveland on Thursday, June 20th from 9AM - 4PM with a complimentary luncheon! If you are an OsteoWarrior or caregiver of an OsteoWarrior who has been out of treatment for a minimum of one year, we will happily welcome you to Ambassador Agent Training! Also live at FACTOR will be the June 19th evening session of Healing Hearts for Parents. Lori Krause will hope to meet you all in the Hotel Cleveland at 7PM. The session will also be available over Zoom.
Please email isabel@mibagents.org with any questions.
Sign Up for Ambassador Agent Training at FACTOR
The Childhood Cancer Clinical Data Commons (C3DC) is an open-access web application that serves as the primary source for de-identified, individual-level harmonized data that describes the demographic and phenotypic characteristics of participants. The C3DC offers several key features: 1) Allows researchers to search for harmonized participant-level clinical data collected from multiple studies, 2) Facilitates longitudinal data analyses and 3) Enables custom/synthetic cohort creation and data downloading for subsequent local analyses. The pilot phase contains harmonized data from CCDI’s Molecular Characterization Initiative (MCI) and TARGET Neuroblastoma.
A flagship project cultivated within the CPRIT-funded Pediatric Cancer Data Core (Director: Yang Xie, PhD, Professor and Associate Dean of Data Science, UT Southwestern), the Osteosarcoma Explorer (OSE) is a data commons with clinical, genomic, protein, and tissue imaging data for osteosarcoma research. The goal of the OSE project is to integrate publicly available and institutional osteosarcoma data of various types and share them with the research community via an interactive web interface. The OSE web portal is now accessible to the public. To learn more, watch Dr. Mo Yang discuss the OSE on OsteoBites and read the paper that was published in the ASCO journal: Osteosarcoma Explorer: A Data Commons With Clinical, Genomic, Protein, and Tissue Imaging Data for Osteosarcoma Research. The OSE is currently open to research/education organizations. Email QBRCsupport@UTSouthwestern.edu to request a user account.
If you have a trial that is currently enrolling osteosarcoma patients, please email christina@mibagents.org.
