Spotlight on World FTD Awareness Week

Shining a Spotlight on Research and Participation

World FTD Awareness Week, September 28 through October 4, is an opportunity to bring greater attention to frontotemporal degeneration (FTD), the people impacted by it, and the urgent need for continued research.

FTD is a group of disorders caused by degeneration in the frontal and temporal lobes of the brain. It can affect behavior, personality, language, movement, and other functions, often during a person’s most active years of life.

Because FTD is rare, raising awareness is especially important. So is participation in research.

Awareness can lead to action

Every person impacted by FTD has a different experience. Those experiences can help researchers better understand the diseases, identify patterns, explore potential treatments, and design stronger studies.

The FTD Disorders Registry helps make that participation possible.

People who join the Registry can complete activities, share information about their experiences, learn about research opportunities, and contribute to a growing body of knowledge about FTD.

For researchers, Registry data can help answer important questions and support the development of new studies.

For participants, the Registry offers a way to stay engaged with FTD research over time.

Your participation has value

There is no single FTD experience.

The Registry includes people diagnosed with FTD, current and former care partners, and biological family members, each bringing a different perspective to research.

Every Registry dashboard activity completed and every piece of information shared adds to what researchers can learn.

That is especially important in a rare disease like FTD, where access to enough participants and enough data can be one of the biggest challenges facing researchers.

Numbers Have Power.

Ways to take part during World FTD Awareness Week

If you are already part of the Registry, World FTD Awareness Week is a good time to stay engaged.

You can:

• Complete available Registry activities
• Review and update your Registry information
• Learn about research opportunities that may be relevant to you
• Share information about the Registry with others impacted by FTD
• Follow World FTD Awareness Week activities and help raise awareness of FTD research
• Download the World FTD Awareness Week Social Media Tool Kit from The Association for Frontotemporal Degeneration (AFTD)

Looking ahead

World FTD Awareness Week shines an important spotlight on FTD disorders, but research continues throughout the year.

The information participants share today can help researchers ask better questions, understand FTD more fully, and prepare for the studies of tomorrow.

Thank you to everyone who participates in the FTD Disorders Registry and contributes to advancing FTD research.

Together, we can continue building the knowledge needed to move the science forward.

Numbers Have Power.