Bella is a child living with an aggressive brain cancer and is also a foster child under county guardianship. While she has been deeply loved and cared for by the same family since birth, her medical journey revealed a harsh reality: access to life-saving and life-extending care is too often limited not by science, but by systems that move slower than disease.
In Bella’s case, missed consent, administrative delays, and system breakdowns directly affected her access to imaging, clinical trials, and potential treatment options. These were not extraordinary failures – they were ordinary delays – and for a child with aggressive cancer, ordinary delays can be life-limiting.
Bella’s experience reflects a broader problem faced by many families, especially children in foster care or under legal guardianship. Clinical research, child welfare systems, and medical care are often not designed to work together with urgency, leaving families to navigate complex legal, medical, and research processes at the most critical moments of their lives.
The Bella Project exists to address the non-medical barriers that quietly determine who gets access to clinical trials and who does not. We provide real-time clinical trial navigation, advocacy for patients facing consent or guardianship challenges, and support for non-medical needs such as logistics, timing, and travel. We focus on systems – not individuals – because systems are what must change.
Bella’s name represents urgency, clarity, and courage. The Bella Project exists because Bella is still fighting – and because no child or individual should lose time, options, or hope to preventable system delays.
Kara Buente serves in both a founding and governance capacity as Founder and President of the Board.
The Bella Project was founded by Kara, a Clinical Research Scientist with extensive leadership experience across academic research, industry-sponsored multi-site clinical trials, and site-level research operations. Her career includes overseeing national research programs and operating a clinical research site, providing deep expertise in trial eligibility, regulatory frameworks, ethical oversight, and the real-world processes that determine access to investigational care. This work is further informed by her prior role as a Clinical Manager for Children’s Services within a local Ohio county, where she gained firsthand understanding of child welfare and guardianship systems.
The organization was inspired by Kara’s personal relationship with Bella and by direct exposure to the non-medical and systemic barriers that can delay or deny timely access to clinical trials when urgency matters most. As President of the Board, Kara brings a systems-focused approach to governance, emphasizing ethical decision-making, conflict-of-interest management, accountability, and organizational integrity. Her combined professional and lived experience guides The Bella Project’s mission to advance equitable access to clinical research for vulnerable populations.
Gianna brings a background in biological sciences and a strong commitment to patient advocacy to The Bella Project’s Board of Directors. Through firsthand exposure to the complexities of the medical system, she has seen how overwhelming clinical care and research pathways can feel without clear guidance and support. Her interest in clinical trials and their potential to expand treatment options informs her board service, where she is focused on helping ensure patients feel informed, empowered, and supported. Gianna believes equitable access to clinical research begins with clarity, compassion, and education.
Megan brings extensive lived experience in foster care and medical advocacy to The Bella Project’s Board of Directors. With over six years of fostering experience and care for numerous medically complex children, she has firsthand understanding of how child welfare systems intersect with urgent healthcare needs. Her family’s experience navigating rare disease and prolonged hospitalization informs her perspective on consent, advocacy, and decision-making under pressure. Megan serves on the board to help ensure foster and adoptive families have guidance, support, and insight when facing complex medical systems.
Sabrina brings a deeply personal understanding of pediatric brain tumors, clinical research, and family advocacy to The Bella Project’s Board of Directors. She grew up with a sister who passed away from a brain tumor, giving her firsthand insight into the emotional, medical, and systemic challenges families face. Sabrina has also participated in clinical trials for a chronic illness, informing her perspective on patient experience, informed consent, trust in research, and vulnerability during complex care decisions. Being closely connected to Bella’s family, her commitment to the mission strengthens her role in ethical governance and informed advocacy.
The Bella Project is actively seeking to add a fifth board member with experience in legal or family law to strengthen governance and oversight related to consent, guardianship, and child welfare considerations.
The Bella Project is a nonprofit organization incorporated in the State of Ohio and recognized by the Internal Revenue Service as a tax-exempt public charity under Section 501(c)(3) of the Internal Revenue Code.
Contributions to The Bella Project are tax-deductible to the fullest extent permitted by law.
EIN: 41-2949604