Our Board

Kay-Diene Robinson, MPH, CHW, is a seasoned rare disease professional, a former sickle cell hemoglobin-SS patient, and a Diversity and inclusion expert. Her journey as a patient advocacy leader began in 2013 and has been marked by highly successful collaborations with thought leaders, healthcare professionals, policymakers, and pharmaceutical collaborations.

Melissa Creary, PhD, MPH is an Associate Professor of Health Management and Policy at The University Of Michigan School of Public Health. With over 20 years of experience, she has dedicated her career to the sickle cell and bleeding disorder communities in roles as a scientist, policy maker, and researcher. A globally speaker, she has addressed justice, racism, anti-racism in health, and biomedicine in over 10 countries.

Ashley Buscetta, MSN, FNP-BC, CWOCN is a Clinical Trials Program Coordinator in the Office of the Associate Director of the Healthcare Delivery Research Program. A family nurse practitioner and certified wound, ostomy, continence nurse (CWOCN) by training, Ashley serves as the Project Scientist in the NCI Community Oncology Research Program (NCORP). 

Dr. Matthew Porteus is an Associate Professor of Pediatrics at Stanford School of Medicine in the Divisions of Hematology/Oncology and Human Gene Therapy. His research focuses on developing gene-editing therapies for genetic diseases using homologous recombination, and he was the first to demonstrate that engineered nucleases can precisely modify human cells. He earned his undergraduate degree from Harvard University and completed his M.D. and Ph.D. at Stanford.

Shirlanna Station, CSM is a results-driven clinical research professional with expertise in oncology and hematology trial operations. She brings strong analytical skills and a deep understanding of clinical research protocols, with experience managing deliverables across multiple stages of the research lifecycle. She specializes in data reconciliation and data integrity using SaaS-based systems, ensuring regulatory compliance in alignment with ICH-GCP and IRB standards. Shirlanna is committed to strengthening regulatory rigor.

Dr. Krieger is a pediatric hematologist-oncologist specializing in bone marrow transplant and cellular therapies at Virginia Commonwealth University. She trained with leading experts in the field of bone marrow transplant and cellular therapies for rare conditions including Fanconi's anemia, metabolic disorders, immunodeficiency and cellular therapies at the University of Minnesota. Krieger is an active member of the American Society of Transplantation and Cellular Therapies and the National Marrow Donor Program.

Adebola Enikanolaiye, PhD is a scientist with expertise in drug discovery, in vivo biology, and pharmacology, with a strong background in genetic and biomedical research. She has contributed to scientific research in rare diseases and model systems that inform therapeutic discovery and pre-clinical efficacy. Her work has involved advancing understanding of disease mechanisms and supporting translational science efforts to improve health outcomes.

Maite Rodriguez is a children’s book author, social worker, and educator with a background in special education. An immigrant from the Dominican Republic, she draws on her personal and professional experiences to create heartfelt stories that inspire, empower, and reflect the diverse journeys of children and families. Her debut book, Just Like the Moon, was inspired by her daughter, Alessia’s courageous battle with sickle cell disease and transplant. 

Jade Parker-Dinkins is a sickle cell disease patient, nurse, and researcher dedicated to advancing patient-centered solutions at the intersection of healthcare delivery, quality improvement, and lived experience. With more than 10 years of clinical nursing experience and over 20 years of advocacy, she specializes in identifying operational gaps, designing culturally responsive care strategies, and implementing evidence-informed improvements.

Taylor John is among the first individuals with Sickle Cell Beta Thalassemia to undergo CRISPR gene-editing therapy, bringing a powerful lived perspective to conversations around genetics, biotechnology, and patient-centered care. Drawing from her experience navigating chronic illness and transformative treatment, she is a passionate advocate for health equity and access. He has spoken at national and community forums, including the National Society of Genetic Counselors Annual Conference.