Every year, organizations across Canada receive funding, donations, and public trust to improve the lives of people affected by dementia. They educate, advocate, and influence policy. They speak on behalf of the dementia community. But here's the question we need to ask: Who is being heard? For Canadians living with frontotemporal dementia (FTD), the answer is too often not us. FTD is one of the most devastating forms of dementia. It frequently affects people in their 40s, 50

As we approach Rare Disease Day on February 28 , we are reminded why raising our voices matters. Rare diseases may be individually uncommon, but collectively they affect millions of people worldwide and thousands of families here at home. They are our parents, siblings, partners, friends, coworkers, and neighbours. Behind every diagnosis is a family navigating uncertainty, searching for answers, advocating for care, and holding onto hope. For families affected by frontotempor