Volunteer Update: How can a Meet & Greet help?

Navigating FTD can be frustrating, exhausting, and isolating for those diagnosed, care partners, and family members. Information about the disease and how to manage its symptoms can be difficult to find, even after a diagnosis.

An AFTD Meet & Greet can help fill these gaps. Meet & Greets are volunteer-led events that bring people affected by FTD together to share resources and support. After leaving a Meet & Greet, you will better understand the FTD journey and acquire the necessary tools to help you meet its many challenges.

What can I expect at a Meet & Greet?

Meet & Greet events offer information about FTD, tips for symptom management, and an opportunity to connect with people who understand what you’re going through.

Volunteer hosts connect participants to the many resources provided by AFTD, including diagnostic checklists to help guide medical providers, or to AFTD Comstock Grants, which offer financial assistance. Meet & Greets also allow volunteers to connect participants with local or national FTD support groups they may be eligible for.

Volunteers and participants discuss the different forms of support available in their area – often offering several options, as not all types of support are suitable for everyone. Additionally, volunteers will answer questions as best they can. Participants are encouraged to contact AFTD Helpline for any questions that hosts may not be able to answer.

Because FTD is not yet widely known, people living with the disease may struggle to find understanding, even among sympathetic family and friends. It’s especially difficult when you find yourself in a particular age group or community that presents its own set of challenges, such as a young adult caring for a middle-aged parent, a member of the LGBTQIA+ community or who is looking for support in Spanish. resources.

We recently spoke to Tanisha Gupta about her experience as a young adult in a care partnership for FTD. Gupta says it can be difficult for others to understand what the disease is really like.

“I was in college when my mother was diagnosed with bvFTD,” Gupta said. “Even though I was lucky to have supportive friends, they didn’t understand the struggles I was going through – my mother’s bvFTD was very different from their elderly grandparents’ Alzheimer’s.

By participating in a virtual Meet & Greet, Gupta finally had the chance to connect with people who implicitly understood what she was going through. “I can’t stress enough the importance of having a group of trusted and similarly situated companions who can help each other through this process,” Gupta told AFTD.

Meet & Greets can lead to connections that provide support long after the event has ended. Some Meet & Greet events are designed to recruit members of a newly launched support group for the area. Gupta said her Meet & Greet experience inspired her to start a whole new group.

“I created the support group I currently lead for young adults whose parents have FTD after attending a virtual young adult meetup in 2020,” Gupta said. “I recently attended an in-person Meet & Greet in New York, and it reminded me why I find this community so valuable. I finally got to meet people in person after talking to them on Zoom for the last (three) years!

Would you like to attend a Meet & Greet near you? Check out the AFTD Events page!

Would you like to receive an email alert when a Meet & Greet is planned near you? Sign up for AFTD emails