Funding Research - Advocacy in Action

Elora's journey taught us the issue of limited government funding for pediatric cancer research, with only 4% of the budget allocated and even less for brain tumors. Brain tumors are the leading cause of cancer deaths in children, making research into Diffuse Intrinsic Pontine Glioma (DIPG) crucial. Advocacy is critical for raising awareness for a CURE! With no funding, there will be no cure. With no awareness, there will be no funding.

Programs - Advocacy in Action

Research for a Cure

  • DIPG-DMG National Brain Tumor Board

    The DIPG DMG National Brain Tumor Board offers free, confidential expert guidance for providers and families dealing with Diffuse Intrinsic Pontine Glioma (DIPG) and Diffuse Midline Glioma (DMG), aggressive pediatric brain tumors. Composed of experienced neuro-oncologists and specialists, the board helps confirm diagnoses, recommend treatment protocols, identify clinical trials, and provide virtual second opinions. By leveraging collective expertise and promoting data sharing for research, their goal is to improve care and outcomes for DIPG/DMG patients. The Elora J. Khan Foundation is thrilled to be a funder of this important initiative.

  • DDRFA | EJK Foundation

    The Elora J. Khan Foundation has partnered with the DDRFA - DIPG / DMG Research Funding Alliance to support research and funding efforts for diffuse midline gliomas, including DIPG. These aggressive and typically terminal brain tumors mostly affect children aged 4 to 12, but can impact adults as well. Symptoms often include visual disturbances, speech and motor impairments, and unsteadiness, progressing rapidly until inevitable demise, with most treatments remaining unchanged for over 60 years. The foundation is committed to collaborative research, aiming to improve outcomes and find a cure for this devastating disease through dedicated efforts, partnerships and data sharing.

  • My DIPG Navigator

    My DIPG Navigator offers free, personalized, one-on-one support from experienced pediatric oncology nurses to families of children diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) or Diffuse Midline Glioma (DMG). They help families understand the diagnosis, explore treatment options, connect with medical experts and support resources, and provide ongoing guidance and emotional support throughout the child's journey.

  • Home

    Support and reassurance to those facing a diagnosis of diffuse midline glioma (DMG), including DIPG, acknowledging the emotional and physical challenges involved in caring for someone with this daunting condition. It emphasizes the importance of community, family, and friends in providing support and highlights resources like the Support Now Registry to help supporters understand how best to assist. LiveBrave2gether aims to guide and connect affected families and foundations, offering resources, shared experiences, and practical assistance to navigate the journey with DMG. The organization encourages open communication, providing contact details for email, mailing, and immediate phone support to ensure those affected can find help and comfort throughout their difficult journey.

Grants Funded

  • Rebecca Ronsley, MD, FRCPC – Seattle Children’s Hospital

  • Sabine Mueller, MD, PhD, MAS – University of California, San Francisco

  • Your Generosity is Fueling Hope: Major Grants Awarded for DIPG/DMG Research! The Elora J Khan Foundation is thrilled to announce the awarding of two significant grants to groundbreaking research projects focused on Diffuse Intrinsic Pontine Glioma (DIPG) and Diffuse Midline Glioma (DMG). These grants, made possible by the generous donations received at "Elora for a Cure," will fund the critical work of two exceptional researchers: Rebecca Ronsley, MD, FRCPC – Seattle Children’s Hospital Project: "Novel Correlative assessments of performance of quad-targeting CAR T cells for children and young adults with DIPG or DMG" Impact: Dr. Ronsley's innovative research will advance our understanding of CAR T-cell therapy by analyzing changes in cerebral spinal fluid (CSF) during treatment. This will help us understand how these advanced therapies are performing and inform future clinical trials, moving us closer to effective treatments. Sabine Mueller, MD, PhD, MAS – University of California, San Francisco Project: "Microbiome Discovery in Pediatric DMG Patients" Impact: Dr. Mueller's pioneering work explores the connection between the microbiome and outcomes in DMG patients. By analyzing stool samples and integrating this data with other profiles, her research aims to uncover crucial microbial pathways that could impact treatment effectiveness and survival, opening new avenues for therapeutic intervention. To all our incredible donors: Thank you! Your support is truly invaluable and makes this crucial work possible. Every contribution directly translates into funding for dedicated scientists like Dr. Ronsley and Dr. Mueller, who are tirelessly working to find answers and cures for these devastating diseases. Together, we are fueling hope, advancing research, and moving toward a cure. Join us in celebrating this incredible milestone and stay tuned for more updates on the remarkable impact your contributions are making!