What a New Funder is Doing to Help People with Neurodegenerative Diseases Get Care

Remember that time you messed up your ankle and got extremely frustrated while navigating your healthcare and other immediate needs—multiple doctors, hospitals, insurance, additional caregivers, transportation, who knows what else? Or maybe you needed surgery and struggled for months to figure out who was billing you for what, and what was covered by your insurance.

For people with really complicated medical conditions such as neurodegenerative diseases, all that is much more difficult and the frustrations can last a lifetime. According to the Adira Foundation, it doesn’t necessarily have to be that way.

An Accident Spurs Action

Adira founder and CEO Greg Smiley went through the medical maze himself after a bad bicycle accident while working in South Africa (mountain road, high-speed, face-first, concrete). The experience started him on a tough journey of a dozen surgeries over five years—and he was someone with a lot of knowledge about healthcare. He’d long been a professional health advocate, including nearly a decade working on AIDS and international health for the U.N., in Washington, D.C., Switzerland and South Africa.

“I’d been an advocate for others for 20 years, and was employed and had health insurance, but I was still flat-out frozen in place trying to figure out how I was going to cobble together a care plan, find surgeons, everything.”

Smiley started to wonder how people manage with more complicated health issues and far less experience. So after getting his own body and soul back together, Smiley started building what became the Adira Foundation, which launched earlier this year. The Adira team decided to focus on helping people with neurodegenerative diseases—Alzheimer’s, ALS, Huntington’s, MS and Parkinson’s—to navigate the gaps in healthcare and other everyday needs.

Reaching that goal required understanding the needs of all stakeholders involved, explained Adira board member Alan Abramson. The foundation forms its funding strategy through input from those stakeholders, including people living with the diseases, caregivers, doctors, hospitals and others.

This conceptual crowdsourcing may not in itself sound unusual—after all, most foundations listen to their constituencies to some extent—but Adira organizers say it will take that sort of “intensive listening” a big step further. “We’re really trying to be a neutral broker and a convener of these groups,” Abramson said. “We’re not starting out with a preconceived notion or a set agenda.”

Designing a Grantmaking Strategy

Adira designed its second round of grantmaking based on that sort of stakeholder input. Not surprisingly, given the events of the past nine months, the new grants will address the needs of people living with neurological conditions that are created or exacerbated by the COVID-19 crisis, Smiley said. The foundation’s fall 2020 Pervasive Needs Grants will award at least $250,000 around three priorities: improving caregiver mental health, easing coordination of care, and sharing resources within communities. (Adira’s first round of grants also supported responses to COVID.)

Seed funding for Adira came from a prior health nonprofit project that was shuttered; new donations have come from foundations and individuals. As a funding intermediary, Adira is looking to raise money from a mix of donors, including foundations, corporations, and individuals, and through that diversified fundraising to retain its objectivity and independence. And while it is, for the moment, focusing on the five neurodegenerative conditions named above, nothing is set in stone.

“By the nature of these disease states, people have to deal with a variety of different providers, about mobility, emotional and mental health, and other things,” Smiley said. “But I’m not even sure if these are the right five diseases to bundle together—we’ll try it out.”

The point, says Smiley, is to see if Adira can help find ways to transform the healthcare system in miniature. “No one entity can shoulder all the responsibility for someone’s health improvement, whether it’s hospitals, insurance companies, clinicians, Medicare or Medicaid,” he said. “I don’t know the answers, but I want to widen the circle to bring in all the people involved to find the answers.”