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Lead investigator

Collaborators & Co-Investigators

• Gerald Pfeffer, MD, PhD
• Alexandra, King, MD (Co-PI)
• Malcolm King, PhD
• Kehinde Ametepee, MBBS, MPH
• Ashley Secundiak, BSc
• Sharon Jinkerson Brass
• Kala Bolt, RN

Research Sites & Affiliations

• The University of Saskatchewan, Regina, Saskatchewan
• The University of Calgary, Calgary, Alberta

Budget: $50,000

Disorders: Spinobulbar Muscular Atrophy

Research Areas: Enhance Care

Abstract: 

Spinal bulbar muscular atrophy (SBMA; Kennedy disease) is a genetic disorder. It causes weakness, and difficulty with speaking, swallowing and breathing. Recently, we found a very high prevalence of SBMA in Indigenous people in Saskatchewan. Indigenous people affected by SBMA have told us of their wishes for more research. We have identified an approach called “photovoice” as a way to show the lived experience of people with SBMA. Pictures are used to show their lived experience. They then join group discussion with researchers. No studies to date have used the photovoice method in SBMA.

Our team’s approach adapts photovoice to Indigenous methods. We will explore the findings from photovoice using sharing circles. This study will give voice to a community that has not previously been heard. It will increase awareness about SBMA in Indigenous communities. This will hopefully help SBMA patients get access to the resources they need.

Impact: