RICHMOND, Va. — People from five neurodegenerative disease communities named eight priorities as common, pressing needs they face during Adira Foundation’s Jan. 20-21 “Pilot ND Congress,” and began considering solutions around two that rose to the top: mental health and care navigation.

The findings of the congress are summarized in a new report published by Adira.

Adira’s mission is to invest in better lives for people with neurodegenerative diseases, focusing principally on five disease states to start: ALS (amyotrophic lateral sclerosis), Alzheimer’s and related dementias, Huntington’s disease, multiple sclerosis and Parkinson’s disease. The national nonprofit foundation funds programs based on extensive listening to collect the points of view of the people these diseases impact most.

That listening was the purpose of January’s virtual event—the first in a series of conversations where people impacted by neurodegenerative diseases make up the majority of participants and discuss needs and solutions in congress with professionals who provide or fund solutions.

Adira Programs Manager Lauren Ruiz facilitated the event’s conversations.

“We want to find the intersection of what’s important, and also, what’s underserved,” Ruiz told participants. “What we land on will inform our fourth round of competitive grants for nonprofits addressing day-to-day pervasive needs faced by these communities.”

The Pilot ND Congress Outcomes Report summarizes the key takeaways from the January event and was shaped with careful review and feedback from congress attendees.

It names these shared priorities: care navigation support, caregiving, mental health, inclusion of perspectives of people living with neurodegenerative diseases, technology, access to research, convening multiple groups to work together on solutions, and financial assistance.

Adira will share the report with a wider group of people to seek feedback and solutions, including designated workgroups around the topics that rose to the top. A larger event will take place in mid-June to take the priorities named and dive deeper into designing solutions. In November a full ND Congress will gather to coalesce around a plan of action to fund, implement and evaluate the solutions.

PilotNDCongressPriorities

In congress with professionals

The report also includes highlights from solutions named around mental health and care navigation—the two priorities that came up most.

Dr. Maria De Leon, of Nacogdoches, Texas, a retired neurologist specializing in Parkinson’s disease who lives with the diagnosis, was one of the 16 people present who are either living with a neurodegenerative disease or are caregivers. They shared in congress with 13 professionals including health care industry and nonprofit executives, government officials, an academic researcher and funders.

De Leon described the frustration of navigating care despite her familiarity with the medical world.

“I literally have to psyche myself up when I go to the pharmacy,” she said. “We need an advocate to help us navigate those kinds of challenges, especially when the patient is not able to.”

Many others shared the frustration that care navigation can cause. The mental and emotional toll of these diseases also came up frequently. People described feelings of loneliness, or a shift in their sense of purpose or identity.

Paul Martin of Staunton, Virginia, provides care for his wife who has Alzheimer’s and he lives with Parkinson’s-like symptoms.

“I’m tired of reinventing me,” he said.

At the pilot, Adira Founder and CEO Greg Smiley presented some of the work Adira has funded so far to seek feedback, as well as to demonstrate its model and the importance of the congress work to it.

“In 2022, through these congress events we are beginning a new cycle of listening and expanding it exponentially from previous years,” Smiley said. “We are also bringing new funders to the table who we want to join us in addressing these challenges named by people impacted by these complex, costly diseases and the solutions they help design.”

The ND Congress series is sponsored in part by Bristol Myers Squibb, EveryLife Foundation, Genentech, Johnson & Johnson, Mitsubishi Tanabe Pharma America and Otsuka.