Adira is investing in several demonstration projects—these are evolving as we partner, grow and change.

Navigation: Network mapping

network map

The network map is an interactive, digital resource directory. It easily organizes and visualizes large networks as a searchable database, providing a powerful tool for trend analysis, community building, and health systems navigation.

We are currently mapping the organizations and services across the five diseases.

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.

Caregiving: 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.

The microsite is currently in beta mode. You can view it, submit resources and provide feedback at takecare.community.

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.

Story collection

juvenile Huntington's diseaseAdira 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.

We partnered with StoryCorps to produce 13 audio conversations among people impacted by neurodegenerative diseases.

You can some of our collected stories here.

Life after work: SSDI education

Huntington’s Disease Society of America (HDSA) provides education around the Social Security Administration’s disability programs for people impacted by Huntington’s disease.

HDSA’s disability program is run by an attorney, Allison Bartlett. She help families start thinking about and planning for the Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) application processes, as well as the appeal process. She’s also building a library of resources on the topic.

Check out an update from Allison Bartlett, the program’s manager, here.

Peer-to-peer counseling around clinical research

Memory Advocate Peers is a program from CaringKind in New York City that trains volunteer peer mentors to provide support to newly diagnosed individuals with dementia and their caregivers. The mentors are former caregivers of a person with dementia and can offer a listening ear, provide support, and connect to local resources and clinical research trials.

The program is being developed and led by people living with dementia, care partners, community-based experts in dementia care and health care leaders.

Learn more about the program here.