About FTD
Frontotemporal dementia (FTD) is a devastating form of early-onset dementia and is characterized by a rapid decline in executive function, behavior and/or language,¹ and typically leads to death within seven to 13 years of symptom onset and three to 10 years from diagnosis.²˒³ People with FTD experience severe personality changes, behavioral disturbance, loss of language, apathy, and reduced mobility.⁴


FTD typically strikes younger than Alzheimer’s disease and the majority of FTD cases occur between 45 and 68 years of age.⁷˒⁸ Given the early onset, FTD has a substantially greater impact on work, family, and finances than Alzheimer’s disease.⁹

FTD can be separated into familial and sporadic FTD. Sporadic FTD is more common and occurs when only one person in a family has FTD. Whilst some familial FTD has no known cause, a strong family history is found in about one-third of cases. The majority of inherited FTD is accounted for by autosomal dominant disease-causing mutations in three genes, including the GRN (progranulin) gene.¹⁰

FTD often presents insidiously and progresses over time, and can be diagnostically challenging. As disease education, genetics knowledge, access to genetic testing and research and treatment options grow, the numbers of diagnosed individuals, as well as those identified to be at-risk, are expected to increase.

Approximately 11,000 people in the U.S. and EU5 are living with FTD-GRN, and it’s estimated that 2,000 new cases are confirmed annually.¹˒¹¹

Currently there are no disease modifying treatments available for people with FTD.
REFERENCES
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- Galvin JE et al. Neurology. 89(20):2049–2056;
- Greaves and Rohrer J Neurol. 2019; 266(8): 2075–2086.
- Kuang, L., et. al. Frontotemporal dementia non-sense mutation of progranulin rescued by aminoglycosides. Human Molecular Genetics 2020;29(4):624-634;
Caregiver Stories from the FTD Journey
Hear directly from family members of people affected by frontotemporal dementia (FTD) and learn more about their experiences from receiving a diagnosis through the progression of their loved one’s dementia.
A daughter’s FTD story
Jacquelyn’s mother’s FTD symptoms began as early as 2013, starting with insomnia, memory loss, and differences in her usual behavior. Hear from Jacquelyn as she recounts her mother’s FTD journey and how their family is navigating this devastating disease together.
A wife’s FTD story
Tanya’s husband was a beloved partner, father, and high school history teacher, who ultimately passed away five years after his FTD diagnosis. Learn more about his FTD diagnosis, Tanya’s role as his caregiver, and her mission to raise awareness of FTD.

“It’s heartbreaking to see how fast neurodegenerative diseases, such as ALS and FTD, change the lives of patients, families and caregivers. At AviadoBio, we listen intently to this community and know their input into our work is invaluable. We extend this same compassionate approach to those we work with so everyone can collaborate by sharing their ideas and offering creative solutions.”
Farah Speer
SVP, Communications and External Relations