The Chondrosarcoma Foundation, founded after 28-year-old Shayna Elise Kramer lost her battle with stage 3 conventional chondrosarcoma in 2019, is a non-profit organization with the mission of raising awareness and advocating for patients with chondrosarcoma. Shayna hoped to educate the world about chondrosarcoma and help patients with this rare bone tumor. Shayna’s father, Jeffrey Kramer, founded the Chondrosarcoma Foundation in her honor in May 2020. In addition to providing educational and support resources for patients, families, and caregivers, the foundation connects experts in chondrosarcoma to facilitate networking opportunities and promote chondrosarcoma research. The foundation also advocates for the establishment of an effective treatment protocol for chondrosarcoma and ensuring patients have access to care. The Chondrosarcoma Foundation website provides reviews of chondrosarcoma from experts in the field and videos from the foundation’s “Virtual Dialogue” event, an international annual virtual event where physicians and researchers in chondrosarcoma share the latest knowledge in chondrosarcoma. The website also highlights the stories of chondrosarcoma warriors and survivors. The foundation also established “Chondrosarcoma Awareness Day” on February 6^th to raise awareness internationally about chondrosarcoma. Participants are asked to share pictures of themselves wearing a yellow ribbon along with information about chondrosarcoma and the hashtag #cswecare. The foundation is currently in the process of establishing a chondrosarcoma patient registry to launch in February 2023. MyPART is excited to welcome the Chondrosarcoma Foundation as an advocacy partner and looks forward to collaborating with them in our shared mission to help improve the lives of people with rare solid tumors and their loved ones.

Several members of the MyPART team participated in the recent NCI Childhood Cancer Data Initiative (CCDI) virtual workshop, “Advancing a National Initiative for Rare Cancers in Children, Adolescents, and Young Adults,” on November 18^th from 10:00am to 3:30pm ET. Dr. Brigitte Widemann, Chief of the NCI Center for Cancer Research, Pediatric Oncology Branch (POB), Special Advisor on Childhood Cancer to the NCI Director, and member of the CCDI Steering Committee, co-led the virtual workshop with Dr. Gregory Reaman, the recently named Scientific Director of CCDI. The virtual workshop brought together experts in rare cancers and pediatric cancers (all pediatric cancers are considered rare) to share their thoughts on how to create a successful national program for studying rare cancers. Discussion topics included lessons learned from previous and current rare cancer research programs, the CCDI data ecosystem, rare tumor boards, and the importance of patient and advocacy involvement in research. Dr. Mary Frances Wedekind, Principal Investigator of the MyPART Natural History Study of Rare Solid Tumors, presented an overview and vision of a framework for a national rare tumor study. In both the morning and afternoon sessions, an expert panel discussed challenges and opportunities. View the recording of the workshop here. Learn more about CCDI workshops here.

Are you working to develop an innovative cancer technology that addresses rare and/or pediatric cancers? If so, the National Cancer Institute’s (NCI) Small Business Innovation Research (SBIR) Development Center offers funding and resources that can help you bring it to fruition.

SBIR is the NCI’s main engine for supporting the commercialization of novel cancer-related technologies.  NCI SBIR funds a diverse portfolio of small businesses who are developing technologies to prevent, diagnose, and treat cancer. 

NCI SBIR is excited to offer a new $300,000 contract funding opportunity, The Innovative Concept Award, to incentivize high-risk/high-reward research in the area of rare and pediatric cancers. This opportunity is specifically designed for small businesses developing highly innovative and transformative technologies that have the potential to create new scientific paradigms by establishing entirely new approaches towards improved prevention, detection, and treatment in pediatric and/or rare cancers.  If you are a small business developing a technology that fits these criteria, we encourage you to apply.

No preliminary data is required, as the review criteria are heavily focused on innovative solutions, scientific rationale and the ability to de-risk game changing ideas. The next application period is anticipated to open in March 2023. Interested parties are strongly encouraged to submit short 2–3-page white papers to gain NCI’s perspective as to whether the proposed technology is within scope of the type of research being sought in the Concept Award solicitation. Before doing so, you are encouraged to visit the Innovative Concept Award page, where informational webinar registration links will soon be available.      

Technology commercialization in low population cancer indications faces many challenging hurdles, including limited strategic partnerships and difficult clinical trial patient enrollment. Therefore, an important feature of the Concept Award Program is the brokering of stakeholder relationships. To assist with this component, the NCI SBIR team is building a network of interested rare and pediatric cancer disease foundations to support Concept Awardees on their path towards clinical testing and product commercialization.  If you are a disease foundation interested in collaborating with NCI SBIR, please reach out to the Program Director, Dr. William Bozza, at William.Bozza@nih.gov.

To date, awards have been made to technologies targeting pediatric rhabdomyosarcoma, pediatric gliomas, esophageal, and oral cancer. As this list continues to grow, we request that interested rare and pediatric disease foundations reach out to the NCI SBIR Development Center and join the Concept Award network. Help us along our path toward accelerating progress in rare and pediatric cancers!

• Dr. Brigitte Widemann gave the annual Anita B. Roberts Lecture - Distinguished Women Scientists at NIH on November 3^rd. The award lecture honors prominent women scientists at NIH. Watch her talk, entitled “Advancing the Development of Effective Therapies for Children and Adults with Rare Tumors,” here.
• Lori Wiener led a discussion panel “Toward equity in cancer pain management for pediatric, adolescent, and young adult populations” during a National Institutes of Health webinar on November 17^th. Dr. Wiener leads the POB Psychosocial Support and Research Program. Learn more about this program here.