Volume 12 | August 2, 2023
Patient advocacy is important, especially as a partner in “better” for kids and AYAs in treatment. We support and are wholehearted in our gratitude for all who find themselves in this role and are the champions of the best possible care for their loved one. MIB Agents are advocates that support and advocate for the osteosarcoma ecosystem of doctors, researchers, clinical care teams, industry, patients and their families. This month the MIB landscape looks like this:
Family Fund Families: Fundraising to support education, programs and research by selling gold mailbox bows for September Childhood Cancer Awareness Month.
Junior Advisory Board Member Camille and alumna Mia co-host the osTEAo AYA podcast. The Patient Panel at our FACTOR 2023 conference received more questions than we could answer, so Camille and Mia take on more questions with our JAB in the August osTEAo.
Patient Representation: MIB Agents is excited to announce that we are now an Associate Member of the Alliance for Childhood Cancer to join the efforts to support policy changes to accelerate drug development and commercialization. I am pleased to have joined the NCCN Bone Cancer Panel. Christina is also injecting patient voice into how clinical studies are designed, exemplified by patient advocates who are working with the CURE Drug Repurposing Collaboratory (CDRC) to advance drug repurposing for sarcomas.
In whatever form it takes, patient advocacy is an essential accelerant in improving patient outcomes and we are proud to share some powerful examples in this issue.
With hope,
Ann
Relive the magic of FACTOR! We gathered to OutThink Osteosarcoma and made connections while working towards better outcomes. We hope to see you at FACTOR 2024 in Cleveland, OH!
MIB Agents is proud to join the Alliance for Childhood Cancer. The Alliance provides a forum of national patient advocacy groups and medical and scientific organizations which meets regularly, shares ideas and concerns, and works collaboratively to advance research and policies to prevent cancer, and improve public education, and the diagnosis, treatment, supportive care and survivorship of children and adolescents with cancer. Showcase your child’s artwork during the 2023 Congressional Childhood Cancer Caucus Summit in a Digital Art Show hosted by the Alliance for Childhood Cancer on September 21 in Washington, DC.! Whether it’s one of your favorite pieces created by your child, or a new work of art they create that illustrates their childhood cancer journey, help us reach our goal of art from all 50 states!
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Meet the incomparable duo Camille and Mia, who are OsteoWarriors and co-hosts of the MIB Agents osTEAo AYA podcast which drops the third Thursday each month. Camille and Mia delve into heavy topics with honesty, humor and compassion. We asked them to share their osteo stories with us, how living with cancer has affected their identities, and what inspired them to start osTEAo.
If you have a job posting and you would like it included here, please email christina@mibagents.org.
Watch Past Episodes and See the Upcoming Schedule
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A virtual tumor review board for osteosarcoma, TURBO is open to global 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 13th at 5pm ET
Thank you to our extraordinary Warrior Mail Writer Agent volunteers for their devotion to our Warriors. July is MIB Postcard month and they delivered a record-smashing 1,352 postcards to 44 OsteoWarriors! Would you like to join us in brightening the days of OsteoWarriors in treatment? We would love to have you!
Apply for a one year Immunotherapy Fellowship at the NCI Center for Cancer Research. Fellowship begins July 2024 and applications are due August 30, 2023. This fellowship is co-sponsored by the National Cancer Institute (NCI) and the Society for Immunotherapy of Cancer (SITC) and made possible in part by an educational grant from EMD Serono.
Critical Path Institute's (C-Path) CURE Drug Repurposing Collaboratory (CDRC) and the U.S. Food and Drug Administration’s (FDA) CURE ID app are expanding beyond the initial focus on infectious diseases to impact and support sarcoma treatment innovation through drug repurposing. The beta testing version of the clinical sarcoma CRF is now available for testing and providing user feedback. CDRC will be conducting formal user-testing of the Sarcoma Clinician Case Report Form in July and August, specifically focused on collecting cases of angiosarcoma, perivascular epithelioid cell tumor (PEComa) and epithelioid hemangioendothelioma (EHE). Email CDRC@c-path.org for more info.
ACCELERATE brings together academia, industry, advocacy and regulators to find solutions for more and better innovative therapies for children and adolescents with cancer and engages with the international regulatory environments. Cancer research in adolescents and young adults has made slower progress than in any other age group. One reason is that many clinical trials exclude patients under 18 – without medical justification. To reduce AYA inequities in access to novel anticancer therapies, ACCELERATE established a Working Group on Fostering Age Inclusive Research (FAIR Trials) in 2017. Made up of 15 experts from academia, industry and parents/patients advocacy, the group aims to raise awareness and promote change. FAIR is seeking medical oncologists to join the Breaking the 18 Years Dogma initiative! Visit the FAIR webpage to learn more about the work done and activities conducted over the last few years and apply online to join the FAIR multistakeholder initiative!
Join the FAIR multistakeholder initiative
If you have a trial that is currently enrolling osteosarcoma patients, please email christina@mibagents.org.
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