Abstract:
Huntington’s disease is a dominantly inherited neurodegenerative disease that is characterized by progressive impairments in movement and higher cognitive functions and the emergence of psychological features. Although the prevalence of Huntington’s disease among the Māori (the Indigenous people of New Zealand) has not been formally quantified, there is evidence to suggest the prevalence is ten times the world average. Dr. Melanie Cheung and her colleagues have spent the last seven years building a strong research partnership with a large, 200 member Māori Huntington’s disease family that approached us to work with them, because they had no access to specialist Huntington’s disease services. They have subsequently developed ethical culturally-appropriate biomedical and clinical best practices for working together in a meaningful way. Building on the research partnership with the large Māori Huntington’s disease family and in partnership with Dr. Michael Merzenich and his team at the Brain Plasticity Institute, Posit Science at San Francisco, CA, Dr. Cheung recently developed the first ever brain plasticity-based training program to treat Huntington’s disease. The program is culturally-responsive containing Māori language and and cultural components for our Māori participants. Brain plasticity-based therapeutics harness the brain’s natural ability to adapt in response to changes in input, resulting in long lasting structural and functional changes. They hypothesize that this will protect the Huntington’s brain and relieve some of the symptoms of Huntington’s disease.