About FTD Canada
FTD Canada is a grassroots not-for-profit dedicated to raising awareness, building community, and advocating for Canadians affected by FTD.
Mission
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Raise awareness of FTD so that Canadians recognize the signs and understand the impact of these diseases
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Advocate for better support including improved access to diagnosis, care pathways, caregiver resources, and research funding
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Amplify lived experience by centering the voices of patients, care partners, and families
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Build community by connecting individuals across provinces who are navigating similar journeys
Why It Matters
FTD is frequently misunderstood or mistaken for psychiatric disorders, Alzheimer’s disease, or Parkinson’s disease. Earlier recognition can reduce stigma, improve care planning, and connect families to appropriate support sooner. In Canada, awareness and services remain uneven, leaving many families feeling isolated and unheard.
FTD Canada believes that education, advocacy, and community-driven action can create meaningful change from local conversations to national policy discussions.
Our Vision
A Canada where:
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FTD is recognized and understood
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Families receive timely diagnosis and compassionate support
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Research into treatments and cures is prioritized
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No one faces these diseases alone
FTD Canada is powered by volunteers, caregivers, families, and advocates united by a shared commitment to bring visibility to the invisible and ensure that FTD is part of Canada’s healthcare conversation.
Together, we are turning awareness into action.
Our Story
Miranda's life changed profoundly when she learned that her mother had inherited a rare tauopathy called Frontotemporal Dementia (FTD), more specifically the behavioural variant of FTD (bvftd) and her father was diagnosed with Progressive Supranuclear Palsy (PSP), two rare and often misunderstood neurodegenerative diseases, both on the FTD spectrum.
With little public knowledge and few readily available resources in Canada, she and her sister found themselves navigating a complex medical system while trying to understand two different diagnoses at once. She immersed herself in research, connected with specialists, sought out support networks, and became a determined advocate for better recognition and care.
She experienced the heartbreaking loss of her mother, three uncles, a cousin and countless other family members before them to FTD, all profound moments that strengthened her resolve to ensure other families would not feel as alone or unprepared.
Seeing the urgent need for awareness and community connection, Miranda founded FTD Canada, a grassroots not-for-profit to bring families together, amplify lived experiences, and push for greater education and recognition of FTD across the country.
In 2025, her advocacy led to a historic milestone; five provinces issued official proclamations recognizing World FTD Week, the first time this had ever happened in Canada marking a significant step forward in national awareness and acknowledgment of the disease. In 2026, she made history by bringing forward the first Private Member’s Statement in the Manitoba Legislative Assembly recognizing FTD and PSP. The statement was inspired by her own family's journey, honouring her parents and recognizing the realities faced by families living with these devastating diseases. This historic milestone helped raise awareness of FTD and PSP while giving a voice to those affected across Manitoba and Canada.
Today, Miranda is a passionate public speaker and advocate, committed to helping families navigate diagnosis, caregiving challenges, and the complexities of the healthcare system. Through education, storytelling, and community engagement, she transforms her family’s experience into hope and practical guidance for others.
If Miranda’s story could support your community or event, she welcomes opportunities to share and connect and you can reach out at ftdcanada@shaw.ca.