Every Step Matters: IRHS Raises Awareness About Kennedy’s Disease
Every Step Matters: IRHS Raises Awareness About Kennedy’s Disease
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Halton’s Iroquois Ridge High School (IRHS) came together to take meaningful steps toward greater awareness of Spinal-Bulbar Muscular Atrophy (SBMA), also known as Kennedy’s Disease, a rare X-linked recessive genetic disorder that primarily affects people assigned male at birth and causes a loss of motor neurons (Lieberman, Andrew P.). Research has also found that SBMA occurs at a significantly higher rate among Indigenous populations in Western Canada (Lamont, Ryan et al.).
The event started on October 6th, with poster boards scattered across the school, displaying educational material, various types of support, and how the community could help make a difference. Additionally, the school created prizes and giveaways for students who participated in a Strength Challenge that tested how much weight one can grip and hold. The challenge included a candy prize and would demonstrate to students the difference between their strength and that of a patient with SBMA who experiences muscle weakness (“What Is Kennedy’s Disease?”).
Later, on the 7th, over 400 students had participated in the 100-Step Challenge around the school track during their lunch break. The activity was designed to help participants gain a better understanding of how everyday activities, such as walking, can become challenging for individuals living with Kennedy’s disease. The whole school community wore the blue wristband “Cure Kennedy Disease” to show support and advocate for Kennedy’s Disease.
The school was also honoured to welcome Max Zhou, PhD, MS, who spoke with the Grade 11 and Grade 12 Biology classes about Kennedy’s Disease. He shared valuable information and helped students better understand its impact. His presentation included educational materials, classroom discussion guides, age-appropriate facts about SBMA and neuromuscular disease, and a Q&A period.
Students learned that, over time, independence becomes difficult. Everyday tasks that may seem routine to others can become significant challenges for individuals living with the condition, for example, climbing stairs, getting up from a chair, or even walking. Max Zhou, PhD, MS, is an accomplished pharmaceutical executive with more than 25 years of leadership experience spanning R&D, CMC, regulatory affairs, and global business development. In the rare-disease field, he is a member of the Kennedy’s Disease Association (KDA) and the Neuromuscular Disease Network for Canada (NMD4C), and he contributes to the University of Toronto’s PRMT6 project team. He is also actively involved in research on other rare diseases, including Wilson disease, tuberous sclerosis complex (TSC), erythromelalgia (EM), and Duchenne muscular dystrophy (DMD). IRHS and community would again like to thank Max for taking the time to share his experiences and for helping make this meaningful awareness event a success.
These two days brought attention to the challenges faced by individuals living with Kennedy’s Disease. This event could not have happened without the support of staff, students, Muscular Dystrophy Canada and the Kennedy Hope Education Foundation, a non-governmental organization that wrote the original proposal to Muscular Dystrophy Canada in order to create this Ontario school-based awareness campaign. Iroquois Ridge High School is one of the only documented secondary institutions in Canada to be formally recognized by the global Kennedy's Disease Association for organizing a dedicated student-led awareness campaign. Thank you to everyone who took part in the event and helped bring awareness to the community.
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