Adira will invest in several internal flagship projects—these are evolving and changing as we partner, grow and change. Here’s a sampling of a few that underway: Network mapping, virtual care hub, storytelling, and community engagement and convening.

Network mapping

network mapWe are mapping the organizations and services across the five diseases with a visual analysis tool. We hope to identify trends, such as joint efforts to support and strengthen.

Download this overview of the network map (PDF).

Phase one of the network map project is already underway in partnership with VirginiaNavigator.

Learn more in this press release.

Virtual care hub

Adira is working with the National Alliance for Caregiving to design a website for sharing caregiving resources. The project will be a clearinghouse of credible resources to help family caregivers navigate the siloes in U.S. health, social, and long-term care systems.

Caregivers are central to the journeys of all people with ALS, Alzheimer’s, Huntington’s, MS, and Parkinson’s. During the last six months, that role is changing as stay-at-home recommendations began and people with compromised immune systems are making difficult choices about leaving home and allowing visitors. More people are stepping into care roles for the first time. We want them to have a one-stop-shop for connecting and learning around caregiving.

Storytelling

Adira wants to gather and share the stories of all people with neurodegenerative diseases to hear not only what living with their diagnosis is like from their perspective, but also who they are as people. We want to help people from every perspective—especially those that often go unheard—share their stories, changing the narrative around neurodegenerative disease, while informing our own priorities for impacting change.

Community engagement and convening

We convene as part of every program, but we are working additionally to hear from people of color and others who experience health disparities. Through focus groups and one-on-one interviews we want to paint a better picture of what inequities exist specifically among Alzheimer’s, ALS, Huntington’s, MS and Parkinson’s.

Of course, what it means to convene is changing rapidly and Adira is finding new ways to safely bring together representatives from all five communities to share best practices, hear about innovative services, and create connections.

Hear what we learned at our first major convening here.