A Unified Strategy for Neurodegenerative Disease Advocacy

At the Cures Collective summit in Washington, D.C., stakeholders from across the neurodegenerative disease (NDD) landscape convened to move from conversation to coordination. Scientists, caregivers, advocates, and funders didn’t just share stories—they sketched a blueprint for collective action across ALS, Parkinson’s, Alzheimer’s, Huntington’s, and related conditions.

Here are the key actionable items that emerged from the meeting:

1. Establish a Unified Public Awareness Campaign

Action: Launch a coordinated monthly NDD awareness initiative (e.g., the 11th of each month) featuring infographics, personal stories, and shared data.

• Purpose: Reinforce the interconnectedness of diseases like ALS, PD, FTD, and Alzheimer’s in public discourse.

• Tactics: Social media toolkits, co-branded assets, and monthly themes to elevate urgency and empathy.

• Outcome: Build sustained public and policymaker engagement through consistent messaging.

2. Create Cross-Disease Advocacy Teams

Action: Assemble “unified disease teams” to visit Capitol Hill and advocate collectively for NDD-related policy.

• Purpose: Present a powerful, inclusive message that highlights shared needs (research funding, caregiver support, prevention).

• Tactics: Organize joint Hill Days, wear disease-specific shirts under a shared campaign umbrella.

• Outcome: Reduce policy fragmentation and increase legislative impact through one-voice advocacy.

3. Push for Federal Investment in Prevention & Environmental Research

Action: Support and help reintroduce the Healthy Brains Act and advocate for the newly formed NIH Institute of Neuroscience and Brain.

• Purpose: Elevate environmental exposures as a root cause across NDDs.

• Tactics: Publish white papers on shared environmental risk factors; back funding initiatives exploring toxicants like pesticides, air pollution, and industrial solvents.

• Outcome: Shift investment from late-stage treatment to early intervention and prevention.

4. Champion Caregiver-Centered Legislation

Action: Inventory and support caregiver-related legislation that spans disease areas.

• Purpose: Address universal caregiver burdens and increase bipartisan support.

• Tactics: Collaborate with the National Alliance for Caregiving, distribute sign-on letters, and co-develop legislative briefs.

• Outcome: Advance scalable policy wins that improve quality of life for millions.

5. Convene an Annual Neurodegenerative Disease Research Summit

Action: Host a cross-disease research workshop or add a pan-NDD track to existing conferences (e.g., NEALS, AAN, MDS).

• Purpose: Encourage dialogue between disease-specific researchers and those working on overlapping mechanisms like inflammation, mitochondrial dysfunction, and protein aggregation.

• Tactics: Invite scientists from ALS, PD, AD, FTD, etc., to present jointly; highlight shared pathways and therapies.

• Outcome: Accelerate translational research through collaboration, not competition.

6. Build a Centralized, Multi-Disease Data Repository

Action: Fund and coordinate a shared data infrastructure that cuts across NDDs.

• Purpose: Break down data silos and promote AI-enabled insights.

• Tactics: Conduct a landscape analysis of existing registries, biobanks, and datasets; identify infrastructure gaps.

• Outcome: Enable big-picture discovery through scalable, disease-agnostic data access.

7. Hire a Full-Time Coordinating Lead

Action: Secure funding for a dedicated, paid organizer to manage and unify these collective efforts.

• Purpose: Ensure the movement doesn’t live “off the side of our desks.”

• Tactics: Create a position to align working groups, track deliverables, and manage communications.

• Outcome: Operational continuity and momentum across years—not just events.

8. Develop Shared Messaging for Education and Policy

Action: Create non-branded, pan-disease educational resources on prevention, early detection, and caregiving.

• Purpose: Equip all organizations—large and small—with tools to educate and activate their communities.

• Tactics: Design customizable fact sheets, videos, and advocacy templates.

• Outcome: Broaden reach and unify language across fragmented awareness landscapes.

What’s Next?

The summit didn’t just spark ideas—it set the stage for a neurodegenerative revolution built on shared urgency, transparency, and collaboration. From monthly awareness campaigns to cross-disease research and advocacy, the path is clear:

We can no longer afford to act alone. To end neurodegenerative diseases, we must move together.