Mental health and care navigation top list of needs for people living with neurodegenerative diseases at Adira Foundation congress
RICHMOND, Virginia — People from five neurodegenerative disease communities named eight priorities as common, pressing needs they face during Adira Foundation’s January 20–21 “Pilot ND Congress” and began brainstorming solutions.
The findings of the congress are summarised 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 non-profit foundation funds programmes 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’s programmes 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 non-profits addressing day-to-day pervasive needs faced by these communities.”
The Pilot ND Congress Outcomes Report summarises the key takeaways from the January event and was shaped with careful reviewed 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.
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 specialising 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 non-profit 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 confusion, frustration and stress that care navigation can cause. The mental and emotional toll of these diseases also came up frequently, including the exhaustion and stress of providing care for a loved one. 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’s 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.
This year, Adira’s fourth round of competitive grants will undergo top-to-bottom design through the Neurodegenerative Disease (ND) Congress,” Smiley said. “ Through the ND Congress, Adira gathers people with lived expertise in congress with those with professional expertise to build appealing, viable, sustainable solutions to common, seemingly intractable problems.”
Anyone can access the report and join the conversation at .
The ND Congress series is sponsored in part by Bristol Myers Squibb, EveryLife Foundation, Genentech, Johnson & Johnson, Mitsubishi Tanabe Pharma America and Otsuka.
About Adira Foundation:
Adira Foundation was founded in 2019 with offices in Richmond, Virginia, and Washington, DC, to transform support and partnerships for people most impacted by neurodegenerative diseases. The foundation is leading a movement to connect neurodegenerative disease communities in shared identity, fund non-profit programs and join with patients and caregivers to co-create more equitable models to help give people more time, money, energy, confidence and connection to live better, fuller lives. Learn more about Adira at adirafoundation.org