GLOBAL HEALTH DISCUSSION FORUM

The Kenyan Retinoblastoma Strategy: building local capacity in the diagnosis and management of Pediatric Eye Cancer

Retinoblastoma (RB) is the most common eye cancer of early childhood. It can affect one or both eyes, and in rare cases, a separate tumor can develop in the brain. In resource-rich countries, 97% of children with RB survive. Since 92% of children affected by RB live in less economically developed countries, this means that although curative therapy is available, the majority of children with RB will not survive.

Through initial information-gathering visits to Kenya, we have observed that access to appropriate and already available care is severely hindered by scant awareness about RB and barriers created by endemic poverty. This multinational, interdisciplinary group works to build local capacity for a sustainable, locally owned health care program that can bring RB survival in Kenya and Eastern Africa closer to that experienced in countries like Canada.

Presented By:

Dr. Brenda Gallie Helen Dimaras, and Morgan Livingstone

Brenda Gallie, MD Brenda’s research and clinical practice is focused uniquely on retinoblastoma. A professor in the University of Toronto’s Departments of Medical Biophysics, Molecular Genetics and Ophthalmology, and Senior Scientist in the Division of Applied Molecular Oncology at the Ontario Cancer Institute/Princess Margaret Hospital, she has constantly challenged the boundaries of science, to improve the lives of her young patients and their families. Her pioneering work has contributed to fundamental understanding of cancer development, and provided affordable genetic tests that save eyes and vision while eliminating unaffected infants from invasive surveillance procedures. She is Director of the Hospital for Sick Children’s Retinoblastoma Program, a collaborative team whose novel therapies have improved vision-saving opportunities for children with bilateral disease, while avoiding the risks associated with traditional radiotherapy. Frustrated by high mortality rates in resource-limited counties, and the clinical research challenges posed by this rare cancer, Brenda co-founded Daisy’s Eye Cancer Fund to help step up action for children with retinoblastoma around the world. She enthusiastically serves as the Fund’s International Medical Director, transferring her extensive knowledge, expertise and innovation in the pursuit of optimal care for all affected children.

Helen Dimaras, PhD Helen Dimaras completed her doctoral degree in the Department of Molecular and Medical Genetics at the University of Toronto. Her thesis work focused on the molecular genetic development of childhood eye cancer, retinoblastoma. After completing her degree, Helen was struck by the fact that her research only reached a minority world’s affected children, while the reality for the majority was suboptimal care. She is currently pursuing post-doctoral training in clinical trials and global retinoblastoma research. She serves as coordinator of a Multicenter Trial of the “Toronto Protocol” for treatment of bilateral retinoblastoma, currently active in Toronto, Vancouver, Montreal and Singapore. She is actively involved in coordination of the Canadian National Retinoblastoma Guidelines for Care, a document that will be useful not only in Canadian practice but also to other nations wishing to form a Retinoblastoma Strategy. As a global retinoblastoma research fellow, her main interest lies in studying the factors that make global health programs effective and sustainable.

Morgan Livingstone, MA, CCLS As a Certified Child Life Specialist and Certified Infant Massage Instructor, Morgan is an expert in child development, promoting effective coping through play, preparation, education, and self-expression activities. She provides emotional support for children and families, and encourages the optimum development of children facing a broad range of challenging experiences, particularly those related to healthcare, illness, trauma and hospitalization. Understanding that a child’s well-being depends on the support of the family, Morgan also provides information, support and guidance to parents, siblings, and other extended family members or caregivers. She believes strongly in educating caregivers, administrators, and the general public about children coping with illness, surviving trauma and who are under stress. She has extensive experience of resource-limited child life implementation through her work with Operation Smile, and diligently advocates for the provision of child and family friendly healthcare across the globe.

When? Where?

Wednesday, December 9, 12 - 1 p.m.
SickKids International
7th Floor Conference Room, Rm. 7008
525 University Avenue (SE Corner Blue Building, Elm Street)
RSVP to dylan.walters@sickkids.ca

The GHDF is a monthly forum for members of the healthcare and educational communities, including physicians, nurses, researchers, teachers, students and others interested in global health. Please join us for informative discussion on critical global health issues. 

Hosted by:

SickKids International,
Peter A. Silverman Centre for International Health, Mt. Sinai Hospital,
Centre for International Health, Dalla Lana School of Public Health, University of Toronto