Blueprint for Action
Adira's strategic review of what worked, what didn't, and what should come next for any organization taking on neurodegenerative disease at scale.
A Review, Not a Recap
In 2021, Adira looked back at three years of work and asked a hard question: how much of what we set out to do did we actually do?
The answer lives in a family of documents, best read in order. A white paper made the case for the model. Commissioned research from GWU's Milken Institute and GOODSTOCK Consulting tested and sharpened it. Then the Transformative Fund Strategic Review measured Adira's actual work against all of it.
The review also names what still needed to happen. The priority recommendations for 2022 through 2024 were never fully implemented because Adira sunset in late 2022. But the blueprint remains, and it also stood as the closing record of the ND Congress series.
The Research Behind the Model
The case for the model came first. Two commissioned research efforts then tested and sharpened it.
GWU Milken Institute
Building New Collaborative Approaches
Analyzed three multilateral health programs: Ryan White, the Global Fund, and PEPFAR. Produced 16 recommendations in two categories: identifying and addressing unmet needs, and engaging other funders.
GOODSTOCK Consulting
Community Engagement & Outreach Strategy
Conducted focus groups with people of color living with ND and POC healthcare providers. Produced 15 recommendations across four categories: network mapping, targeted partnerships, engagement opportunities, and communication.
The final document in the family is Adira's own progress report. The Transformative Fund Strategic Review scored Adira's actual activities against all 31 recommendations. The honest result: high engagement on some, medium on others, and low engagement on a handful Adira had not yet had time to take on.
Adira Foundation Multilateral Funding to Transform Care in Neurodegenerative Disease
The white paper that made the case for the model: pooled funding for common needs across five diseases, inspired by programs like the Global Fund. It explains why a shared approach should work, before any grants went out.
How Adira Organized the Work
Adira's strategic review organized all activities into three modes of working. The review tracked progress in each against the strategic recommendations.
LISTEN
Convenings, focus groups, story collection, one-on-one conversations. Surface unmet needs.
Listen, learn, act. In that order, every time.
LEARN
GWU + GOODSTOCK studies, QOL review, network mapping. Build the evidence base.
ACT
Pervasive Needs Grants, five Flagship Projects, the Rural Project. Fund and partner.
The Progress Report: Adira's Self-Assessment
Adira graded its own engagement with each of the 31 strategic recommendations as Low, Medium, or High. The honest scoring revealed both the strength of Adira's model and the work that remained.
HIGH engagement
Community engagement opportunities
Amplify marginalized voices in ND
Demonstration projects strategically
Identify discrete unmet needs
Personal connections to the diseases
Involve donors in development
MEDIUM or LOW engagement
Social determinants of health
Evolve with research/treatment changes
Recruit POC for stakeholder groups
Set clear measurable targets
Make the case beyond altruism
The unfinished work was not failure. It was the priority list for what came next.
The Blueprint for What Comes Next
The Transformative Fund Strategic Review identified seven priority recommendations for Adira's Programs to focus on across 2022 through 2024.
Continue investing in demonstration projects
1
Test ideas before scaling them through competitive grants.
Deepen integration of social
determinants of health
2
Into every grant decision and program design.
Strengthen partnerships across funders
Increase engagement with people of color
3
At every level: staff, board, grantees, advisors.
5
6
7
Set clearer measurable targets
4
Shared metrics across the field. QOL framework was built for this.
Make the case for investment beyond altruism
Plan to evolve
Economic, demographic, and systemic, not just humanitarian.
Research, treatment, testing, and systems change rapidly.
Adira's role was to convene and coordinate, not to fund alone.
A Blueprint Without an Organization
Adira closed in late 2022. The seven priorities for 2022-2024 were not fully implemented because the foundation no longer existed to implement them.
But the blueprint remains usable. The GWU recommendations remain valid. The five Flagship Projects continue with their partners. The QOL framework is publicly available. The network map infrastructure continues to operate.
If a future foundation, a coalition, or a federal program takes on neurodegenerative disease as a unified community rather than five separate disease silos, this blueprint is waiting.