Norman Saunders Jacob’s Ladder International Research Prize

The Norman Saunders Jacob’s Ladder International Research Prize is an annual award and lectureship that recognizes a leading international researcher whose work has made significant contributions to advancing the understanding and care of neurodegenerative disorders related to paediatric chronic illness. 

About the Prize 

Established through an endowment from Jacob’s Ladder – The Canadian Foundation for the Control of Neurodegenerative Disease, the prize honours the life of Jacob Schwartz, who lived with Canavan disease, a rare, inherited neurodegenerative condition with no known cure, and the legacy of Dr. Norman Saunders, a paediatrician at SickKids. Jacob was cared for by Dr. Saunders, whose compassionate clinical approach left a lasting impact on his family and the broader SickKids community.  

Founded by Jeff and Ellen Schwartz in honour of their son, Jacob’s Ladder supported research, advocacy, and awareness initiatives in neurodegeneration. This prize reflects both Jacob’s legacy and Dr. Saunders’ commitment to improving the lives of children living with complex medical conditions.  

The prize includes $3,000 (CDN) annually from the endowment and is stewarded through the Genetics & Genome Biology program. 

2025 Prize Lecture

Dr. Peg Nopoulos delivered the 2025 keynote lecture on October 8, 2025 as part of Paediatrics Grand Rounds.

Juvenile Onset Huntington’s Disease 

Huntington’s Disease (HD) is a fatal, neurodegenerative disease caused by an expansion of a repeated DNA sequence (CAG) in a gene called Huntingtin or HTT. Although the average age of onset of HD is in adulthood at age 40 years, it can manifest earlier.  Onset and diagnosis prior to the age of 21 years is define as Juvenile Onset Huntington’s Disease (JOHD) and it has unique aspects to its presentation, symptoms, and course of disease.  This talk will focus on JOHD and its potential role for special interest in the field of disease modifying treatment discovery. 

Lecture objectives: 

1. Describe the relationship between length of CAG repeat in the HD gene and how it related to age of Onset 
2. Define Juvenile Onset HD and its subcategories of Childhood Onset and Adolescent Onset 
3. Identify symptoms of JOHD that are unique and those that are similar to typical adult onset HD 
4. Describe why JOHD subjects may be uniquely suited to clinical trials for disease modification drug discovery 

References: 

• Schultz, J. L., D. R. Langbehn, H. M. Al-Kaylani, E. van der Plas, T. R. Koscik, E. A. Epping, P. B. Espe-Pfeifer, E. P. Martin, D. J. Moser, V. A. Magnotta and P. C. Nopoulos (2023). "Longitudinal Clinical and Biological Characteristics in Juvenile-Onset Huntington's Disease." Mov Disord 38(1): 113-122.