The Pilot ND Congress took place Jan. 20-21 as the first in a series of conversations set for 2022 to design Adira’s fourth round of competitive grants. People who have lived expertise discussed problems and solutions in congress with people with professional expertise who provide or fund such programs. 


Part One – Listening: Virtual Pilot

The ND Congress series began with a two-day pilot virtual event in January with roughly 30 participants, the majority made up of people living with ND and caregivers, and the rest professionals (in government, nonprofit organizations, life sciences, academics, etc.) involved with day-to-day services for them.

Throughout the two days, attendees heard from people living with NDs and caregivers on the topics that have surfaced in the listening work Adira has done since launching in 2019:

  • The benefits of shared identity and multilateral models.
  • Five key quality of life measures: confidence, money, time, energy and connection with others.
  • Navigating the landscape of ND services.
  • Mental health and ND.
NDCONGRESS WEBGRAPHICS 20223

In between and throughout, all participants had many opportunities to share opinions and knowledge about:

  • What would most make life better?
  • What is already working?
  • What is missing?

Learn more about the ND Congress series.

Participants came up with a list of priorities for funding and began to consider solutions around two topics. Find out more in the report below.

ND Congress

Let's get to work.

Learn more about what we’ve learned from people living with neurodegenerative diseases and their loved ones — and about what steps we are taking to help make their lives easier.

More About the Series