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The NAA set up a task force to increase our resources and outreach for people living with primary progressive aphasia (PPA) and primary progressive apraxia of speech (PPAOS) and their communication partners. These resources include virtual chats for people with PPA/PPAOS and their communication partners (family and friends).

 

Our free virtual PPA Chats provide an opportunity for people living with PPA and their communication partners to connect, share stories, and provide support for one another. Our facilitators are speech-language pathologist clinicians and researchers who have extensive experience working with people living with PPA. The chats also provide education about PPA with short presentations and guest speakers.

 

There are two PPA Chats each month, along with a PPA Nature and Gardening Club chat. All chats are on Fridays at 2:30 pm ET, but the Fridays vary due to the facilitators’ schedules. You will receive an email from the NAA each month with the upcoming chat schedule if you have signed up for the chats on the NAA website (see below).

 

Both monthly PPA Chats are for people living with PPA and/or their communication partners. We divide into different breakout rooms depending on the variant of PPA or people’s symptoms. This helps them to better identify and chat with the people in their room. It is fine if a communication partner sits next to the person with PPA and aids with communication during the chat. For example, communication partners might help to fill in a missing word to better help the person to get their message across. We also have a breakout room for communication partners who would like to talk to other communication partners at each chat.

 

The NAA set up a task force to increase our resources and outreach for people living with primary progressive aphasia (PPA) and primary progressive apraxia of speech (PPAOS) and their communication partners. These resources include virtual chats for people with PPA/PPAOS and their communication partners (family and friends).

 

Our free virtual PPA Chats provide an opportunity for people living with PPA and their communication partners to connect, share stories, and provide support for one another. Our facilitators are speech-language pathologist clinicians and researchers who have extensive experience working with people living with PPA. The chats also provide education about PPA with short presentations and guest speakers.

 

The chats follow this set format:

 

  • Everyone meets as a group at the beginning of the chat. We give important updates and explain the format of the chat.
  • We welcome new members to the group and ask them to raise their hands. They can tell everyone their name and where they are from if they are comfortable with introducing themselves.
  • Sometimes there is a short presentation about a particular topic, or we may have a guest speaker.
  • We divide into our breakout rooms. The facilitators help to move everyone to the correct room.
  • In the breakout room, there is usually a general question to begin the discussion. For example: “Have you shared your diagnosis with your family or friends? If so, was it helpful?” Participants can engage in the conversation or just listen. No one is put on the spot. The rest of the conversation is an open discussion. Participants can express questions or concerns to the group, and then they discuss them together.

 

We are also offering a PPA Nature and Gardening Club chat once a month. It will also be held on a Friday each month at 2:30pm ET. This chat is for people with PPA who have an interest in the outdoors. Discussion topics will include gardening, hiking, bird watching, and national parks. Sign up for the PPA Chat mailing list, and you will receive the updates and Zoom link for the Nature and Gardening Club chats.

Next Chats

Again, there is no signup for the PPA chats. We send the Zoom link when we announce the chat and then send it again two days before the call. Join the PPA chat mailing list by filling out your information, and you will receive the next mailing that goes out.

 

We do not record our chats, so you will need to attend the chat to view or participate in the chat.

Helpful Links

The NAA set up an email hotline for primary progressive aphasia questions. If you have questions about PPA, you can email ppa@aphasia.org, and a volunteer will make sure your question is answered.

 

We’ve also created an overview of PPA to help you understand the disease. The post includes many links at the end to additional information.

 

You can also download slides that give an overview of clinical studies for PPA.