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A diagnosis of frontotemporal dementia (FTD) can feel overwhelming, disorienting, and even isolating. But one truth matters above all: you are not alone. Across the world, individuals, families, care partners, and professionals are navigating this journey together—learning, adapting, and building supportive communities along the way. While an FTD diagnosis may answer some long-standing questions, it often introduces many new ones. It marks the beginning of a path that require

Frontotemporal dementia (FTD) is a complex brain disorder that affects behavior, language, and movement. Diagnosing it can be challenging because its symptoms often look like other conditions, such as depression or Alzheimer’s disease. Why Is FTD Hard to Diagnose? FTD develops slowly over time. Early signs like personality changes, trouble speaking, or poor decision-making can be subtle and mistaken for other problems. Because of this gradual onset, health care professionals

Frontotemporal dementia (FTD) is a lesser-known but deeply impactful form of dementia that primarily affects the frontal and temporal lobes of the brain. Unlike Alzheimer’s disease, which often begins with memory loss, FTD tends to first alter behavior, personality, language, and decision-making. Because it frequently develops earlier in life—often between the ages of 45 and 65 it can disrupt careers and financial stability at a particularly critical stage. The Workplace Chal

For anyone affected by frontotemporal degeneration (FTD) , including frontotemporal dementia (FTD) , behavioral variant FTD (bvFTD) , primary progressive aphasia (PPA) , progressive supranuclear palsy (PSP) , corticobasal degeneration (CBD/CBS) , or FTD with motor neuron disease (FTD-ALS) finding reliable information and support can be challenging. That’s why the FTD Disorders Registry  stands out as a key resource for patients, caregivers, family members, and the medical an

Corticobasal syndrome (CBS) is a rare brain disorder that mainly affects movement. It belongs to a group of conditions called frontotemporal degeneration (FTD). These disorders damage parts of the brain responsible for movement, behavior, and language. Some of the symptoms of CBS are similar to those seen in Parkinson’s disease, which is why it is sometimes described as a type of “atypical Parkinsonism.” What Happens in Corticobasal Syndrome? In CBS, certain areas of the brai

What Is FTD-ALS? FTD-ALS occurs when symptoms of both frontotemporal dementia and amyotrophic lateral sclerosis develop in the same individual. Each disease affects different parts of the nervous system. FTD primarily damages the frontal and temporal lobes of the brain. These areas are responsible for personality, behavior, decision-making, and language. ALS, on the other hand, attacks the motor neurons that control voluntary muscles, leading to progressive muscle weakness. B

Yesterday in the chamber of the Legislative Assembly of Manitoba, something quietly historic happened. During a Private Member’s Statement, Frontotemporal Dementia (FTD) was recognized on the legislative record, what appears to be the first time the disease has been specifically acknowledged in a legislative chamber anywhere in Canada. For many people, it may have sounded like a brief moment in the routine of legislative proceedings. But for families living with FTD, it repre

Primary Progressive Aphasia (PPA) is a neurological condition that primarily affects a person’s ability to use and understand language. Unlike many other brain disorders that impact memory first, PPA gradually interferes with communication, including speaking, reading, writing, and understanding what others are saying. Because language plays such a central role in daily life, the progression of PPA can make everyday conversations, written communication, and comprehension incr

Behavioral variant frontotemporal dementia (bvFTD)  is the most common type of frontotemporal dementia (FTD) , accounting for about half of all FTD cases. It is sometimes also called frontotemporal dementia  or Pick’s disease . What makes bvFTD different from many other dementias is that the earliest changes usually involve personality, behavior, and social awareness , rather than memory. A person may begin acting very differently from how they used to, sometimes in ways that

Progressive Supranuclear Palsy (PSP) is a rare and complex brain disorder that affects movement, balance, vision, thinking, and behavior. Because many of its early symptoms resemble those of Parkinson's disease , PSP is often misunderstood or misdiagnosed in its early stages. For individuals living with PSP, and for their families, the condition can feel confusing and overwhelming. Learning to recognize the signs and understanding how the disease progresses can help people se

Frontotemporal dementia (FTD) is one of the most misunderstood and under-recognized neurodegenerative diseases in Canada. For families, the journey to diagnosis is often long, confusing, and emotionally devastating. For medical professionals, it can be an uncomfortable clinical challenge; rare, complex, and lacking a single definitive diagnostic test during life. But that discomfort cannot become inaction. If we are to truly support patients and families living with FTD, we m

Every March, Canada observes Brain Health Month , a time dedicated to raising awareness about the importance of brain health across all stages of life. From preventive care and lifestyle habits to understanding neurological conditions, this month reminds us that taking care of our brains is just as vital as caring for our hearts. Why Brain Health Matters Our brains are the command centers of our bodies, controlling thought, behavior, memory, and communication . Maintaining co

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

When most people think of dementia, conditions like Alzheimer’s disease come to mind first. But lurking in the shadows of public awareness is a set of less common, yet deeply impactful diseases collectively known as frontotemporal dementia (FTD). These conditions are rare, often misunderstood, and critically they are demanding more attention from health systems, caregivers, and policymakers across Canada. What Is Frontotemporal Dementia? Frontotemporal dementia is not a singl