Join in July: Help Grow a Research-Ready Community

For families impacted by frontotemporal degeneration (FTD), research offers hope. But research cannot move forward without people who are ready and willing to participate.

That is why this July, the FTD Disorders Registry is launching Join in July, a campaign to grow a research-ready FTD community and help make future discoveries possible.

FTD is rare, and that creates real challenges for researchers. Clinical trials and research studies often need to find specific groups of people, including people diagnosed with different FTD subtypes, current and former care partners, family members, people from families with known genetic variants, and others connected to the FTD community. When there are not enough participants, studies can take longer, recruitment can become more difficult, and important research questions may go unanswered.

The Registry helps address this challenge by bringing the FTD community together in one place.

Everyone is eligible to join the FTD Disorders Registry. Whether you are living with FTD, caring for someone with FTD, have cared for someone in the past, have a family connection to FTD, work with people impacted by FTD, or simply want to support FTD research, you can be part of this community.

When you join the Registry, you can learn about FTD research, share your experience, complete surveys, indicate your interest in research opportunities, and help researchers better understand the needs, experiences, and priorities of families impacted by FTD. Over time, this information can help build a clearer picture of the FTD journey and support future studies.

Your participation matters. Every person who joins helps demonstrate that there is a community ready to participate, ready to be counted, and ready to help advance the science.

Numbers have power.

A larger Registry can help researchers better understand who is impacted by FTD, what families experience, and how to design studies that reflect the real needs of the community. It can also help show that people impacted by FTD and those who care about FTD research are ready to support future research and clinical trial opportunities.

Joining the Registry does not mean you are signing up for a specific study or clinical trial. It means you are taking an important step to stay connected to research and help strengthen the foundation for future discoveries.

This July, we are asking the FTD community and its supporters to help us grow.

If you have already joined, thank you. You are part of a community working to move research forward. You can still take action by completing your Registry activities, updating your information, and sharing the Registry with others.

If you have not joined yet, July is a great time to start.

By joining the Registry, you can help build a stronger, more connected, research-ready FTD community. Join here.

Join in July. Help grow the Registry. Advance the science.