At Adira, February is shaping up to be a month of listening.

Listening to hear what people with neurodegenerative diseases are experiencing is a crucial part of our model. We don’t want to design any programming without first listening and learning about what already exists, and what are the highest priority remaining needs. Check out our About page for more on our model.

Here’s what we’ve got going on:

Support group engagement

lauren setting up pens for meeting
Programs Manager Lauren Ruiz sets up for support group visit to survey people to inform program development.

Adira Programs Manager Lauren Ruiz is leading a series of visits to support groups for people living with neurodegenerative diseases as well as their caregivers. She and a team of facilitators are visiting groups in the mid-Atlantic region and leading participants through a series of questions about their lives. Her goal is to survey 100 people. We are hoping to hear answers to questions like:

  • What works well or has been useful in your health navigation experience?
  • What challenges have you seen in accessing care?

Open call for stories

Adira believes that stories hold a lot of power to shape how people view the world. And that telling stories carefully and honestly can change harmful or misleading ideas people hold as true.

The way people think of neurodegenerative disease can sometimes be negative. People with dementia, who act protectively out of confusion or fear might be called aggressive or agitated. People using wheelchairs or walkers for mobility face a stigma related to society’s ideas about youth and ability. Because of conceptions like these, if you don’t know and love someone with a neurodegenerative disease, you might automatically respond with pity or fear.

But we know that people with neurodegenerative diseases—because those people are our sisters, uncles, grandparents, fathers, cousins, coworkers, etc.—don’t fit those stories we’ve been told. Our grandparents are bus drivers and mechanics. They give blood every three months like clockwork and sing with the men’s quartet in church.

So, the more accurate stories we can tell about the people in Adira’s community, the more we can add fuller, more accurate depictions of living life with neurodegenerative disease.

Let us know if you’d like to tell us your story through our submission form.