Adira Foundation and VirginiaNavigator partnership will build neurodegenerative disease resource directory for easier service access 

For the first time, Virginia residents will be able to easily access comprehensive information on programs and services for people diagnosed with Alzheimer’s disease, ALS, Huntington’s disease, multiple sclerosis and Parkinson’s disease.

Adira Foundation and nonprofit VirginiaNavigator are collaborating to provide detailed listings for local, state and national organizations and services for the five neurodegenerative diseases (ND). With assistance from community-based organizations that serve individuals with ND, Adira and VirginiaNavigator will enhance the patient and caregiver navigation experiences and develop a working model for more complex, targeted network mapping services which can be mimicked in other areas

“Too often, people with neurodegenerative diseases and their care partners feel isolated and overlooked,” said Adrienne Johnson, Executive Director of VirginiaNavigator. “We see this partnership with Adira as an opportunity to shine a light on the services that are available in Virginia and ensure that people with ND are supported and connected.”

A model for resource sharing

Founder and CEO Greg Smiley said this effort pairs Adira’s dataset and its community with VirginiaNavigator’s impressive infrastructure and audience.

“We’ve heard from people around Virginia with neurodegenerative diseases just how exhausting navigating services can be,” he said. “Finding ways to make that easier is a priority for us and we hope this project can serve as a model for connecting five disease communities and sharing resources between them.”

This project, scheduled to go live in spring 2021, will involve:

  • Engaging ND patients and caregivers in community conversations about which services and information they need
  • Adding up to 500 ND-related programs to VirginiaNavigator’s extensive, searchable resource directory, so that people in every part of Virginia — urban and rural — will be able to access services
  • Developing customized ND search widgets to be placed on partner organization websites, to connect targeted audiences to enhanced resources that meet their needs
  • Creating a badge on VirginiaNavigator’s site that indicates an ND seal of approval from the Adira Foundation
  • Developing a feedback survey for patients and caregivers to measure impact

Neurodegenerative diseases affect the lives of millions of Americans. Today, 5 million Americans suffer from Alzheimer’s disease. One million have Parkinson’s disease; 400,000 have multiple sclerosis; 30,000 have ALS (amyotrophic lateral sclerosis), and 30,000 have Huntington’s disease. The incidence of these conditions is expected to rise dramatically as the population ages, creating an urgent need for more services and supports.

The number of Virginians 65 and older is projected to double by 2040 to 1.8 million. Because most neurodegenerative diseases strike later in life, the rates of all five NDs will likely increase along with the aging population. Already 17% of Virginians 65 and older live with Alzheimer’s disease.

Currently, 1 million unpaid family caregivers across the state care for older adults. In Virginia, 467,000 family caregivers provide unpaid care for someone with Alzheimer’s disease.

If you would like more information about the Adira-VirginiaNavigator neurodegenerative disease resource directory, including how to get involved or be included in resource listings, please email info@virginianavigator.org.

 

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About VirginiaNavigator: Founded in 2001, VirginiaNavigator is a public-private partnership nonprofit that provides free information and guidance to older adults, people with disabilities, veterans, and their caregivers and families via an accessible “high tech and high-touch” approach. VirginiaNavigator has a vision for Virginians to be educated and empowered to make informed decisions and effectively navigate challenges and opportunities associated with health, aging, disabilities, and post-military life. Its Lindsay Institute for Innovations in Caregiving seeks to preserve and improve the wellness of family caregivers through inventive and collaborative technology and education initiatives.