About FTD Canada

FTD Canada is a grassroots initiative dedicated to raising awareness, building community, and advocating for Canadians affected by FTD.

Mission

Raise awareness of FTD so that Canadians recognize the signs and understand the impact of these diseases
Advocate for better support including improved access to diagnosis, care pathways, caregiver resources, and research funding
Amplify lived experience by centering the voices of patients, care partners, and families
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:

FTD is recognized and understood
Families receive timely diagnosis and compassionate support
Research into treatments and cures is prioritized
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 Frontotemporal Dementia (FTD) and her father was diagnosed with Progressive Supranuclear Palsy (PSP), two rare and often misunderstood neurodegenerative diseases.

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. Along the way, she experienced the heartbreaking loss of her mother, a profound moment 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 started FTD Canada, a grassroots initiative 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; six 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.

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.