Our Model

How Adira worked, and why it was different from typical foundation grantmaking.

Adira's Big Idea

Adira focused on five neurodegenerative diseases as one community: Alzheimer's disease and related dementias, ALS, Huntington's disease, multiple sclerosis, and Parkinson's disease. In the U.S., that was 8 million people in 2020, expected to grow to 11 million by 2030, a 38 percent increase.

Adira's focus was principally, though not exclusively, on these five. Each disease has unique needs. But seen from a bird's-eye view, they share far more in common than not. Mobility. Caregiving. Cognition. Grief. Financial security. Stigma. Mental health. Isolation. The problems that get funded least, if at all, are usually the ones people share across diagnoses.

Adira took this big bite so it could accelerate new ways of collaborative thinking, financing, and community building. "Adira" is an ancient name meaning brave. The work required it.

Circular diagram illustrating stages of Alzheimer's disease: normal, mild cognitive impairment, and Alzheimer's. The outer ring shows actions like listen and act, and the inner ring lists locations such as Parkison's, Alzheimer's, MS, Huntington's, and Lewy. The center features the word 'Atria'. 
The Problem We Were Solving

Life had grown isolating for everyone. People who were ill felt it most.

Service providers could not solve everything at once. Many took on one population, one point of view, or one service at a time. Each program was designed in good faith. But every additional program could compound the burden on a person. Finding 17 paths for 17 problems would shut anyone down.

A graphic illustrating the healthcare system's inefficiencies with icons of hospitals, doctors, advocacy organizations, governments, insurance, and drug makers connected to patients with ALS and HD. A quote highlights the system's wastefulness.

Silos Isolate and Crush Us

"We have so little time left together, and yet our system forces us to waste it dealing with bills and bureaucracy."

— Ady Barkan, ALS patient, Congressional hearing
OUR SOLUTION

Adira asked people two questions. What do you still urgently need? And what would good help look like?

Then Adira leveraged funding for nonprofit grants designed for a common, integrated response. Solutions were built from equal standing between the people getting help and the people giving it. The result was inventive programs that addressed common problems across all five disease communities: legal advocacy for disability, caregiving resources, mental health services, proper diagnosis, navigation.

Adira turned the vertical health care model on its side. Instead of one service for one population, the goal was wide, system-level work that addressed the cross-cutting needs typically left behind.

A colorful infographic with the title 'Turning the Vertical Health Care Model on its Side.' It explains the problem of asking help feels like climbing a rope alone, and offers a solution of addressing needs of five populations together, with examples including Medicare, hospital discharge, insurance, and more. The infographic shows interconnected circles representing individuals with different health conditions, and a grid illustration of solutions like legal advocacy, navigation, mental health services, and proper diagnosis.

Bridges Across Silos

BEYOND THE BULLSEYE

Adira's work rested on three program pillars. Each one fed the others. Together they were how Adira listened, learned, and acted.

A triangle diagram with three labeled sides: Patient Engagement, Program Grants, and Flagship Projects, with icons representing people, money, and a compass in the center.

Three Pillars of Adira's Work

BEYOND THE BULLSEYE

Singular disease efforts tended to circle in the inner layers of the bullseye: people impacted, their direct supporters, providers, and traditional donors. Adira focused on reaching the outer layers to supplement the inner layers.

That meant boundary spanners, health-adjacent donors, and transformational donors. Sports, entertainment, faith-based organizations, B-corps, venture philanthropists. Adira aimed to reach potential influencers who were unlikely to stand with one singular disease, but who might stand with 8 million people across five diseases for a larger purpose of collaborative reform.

Adira convened these groups on neutral platforms. The aim was community-driven priority setting, movement building, and larger financing mechanisms that brought results-based financing, accountability, oversight, leverage from other sectors, and economies of scale.

Diagram showing concentric circles illustrating the impact of NDs on people. At the center, 'People Impacted by NDs.' Surrounding it are layers labeled 'Supporters, Donors, Providers,' 'Boundary Spanners,' 'Health-Adjacent Donors,' and 'Transformational Donors.' Examples are provided for the outer layers, such as national groups, nonprofits, B-corps, churches, and HBOS. The diagram is branded with the 'Adira Foundation' logo in the top right corner.

Beyond the Bullseye

OUR NORTH STAR

Adira was inspired by the ambition, scale, and scope of successful integrated responses to other health challenges:

  • The Ryan White Program

  • The U.S. President's Emergency Plan for AIDS Relief (PEPFAR)

  • The Global Fund to Fight AIDS, Tuberculosis, and Malaria

Adira applied their best practices. Funded by many. Steered by results. Complementary to other good programs. Informed by what people said they needed.

Five elements shaped how Adira worked: collaborative and additive, objective, community-driven, instructive, and transparent and accountable.

Circular diagram divided into segments labeled 'Collaborative Additive', 'Objective', 'Transparent, Accountable, Reliable', and 'Implementable and Sustainable'.

Inspired by Proven Models

COMPARISON

Adira's approach was a deliberate departure from how most disease-specific philanthropy operated. Here is what that looked like in practice.

Typical Response

  • Looked at what made people unique

  • Person affected as end user

  • Small but mighty communities swimming upstream

  • Designed from the point of view of donor or provider

  • Helpful but limited

  • Ground level: what was easier to count and fund

  • Either designed for the individual or for the system

  • More pressure on any one donor

  • Targeted to the needs of the few

  • Person as their sick self

  • Costly Categorical identity

  • Traditional donors

Adira's Response

  • Looked at what made people typical

  • Person affected as co-collaborator

  • Larger community turning the tide

  • Led by the point of view of the person impacted first, then with the donor

  • Supplementing what already worked

  • Bird's-eye view for more perspective and impact

  • Straddling both, the diagonal approach

  • Diffusion of donor influence and pressure

  • Targeted to the needs of the many

  • Person as their best self

  • Economies of scale

  • Shared identity

  • Transformational donors plus traditional donors

How Adira Worked Differently

A man with glasses wearing a plaid shirt holds a sign with a colorful logo of multiple hand prints forming a peacock and the text 'RAREDISEASEDAY.ORG'. He is smiling and waving with his other hand, standing against a pink wall.
Five men and one woman are gathered in a formal setting with art on the walls and a large chandelier overhead. Some men are engaged in conversation, while others are seated or standing around a table with flowers and papers.
Four people sitting at a conference table in a meeting room, with three women and one man. There are water bottles, notebooks, and food on the table. The room has large windows showing buildings outside, and a glass wall to another room.

See what this looked like in practice.

Explore Our Work