ALS Research
At ALS Rhode Island, we believe that progress in ALS depends on more than funding alone—it requires connection, access, and collaboration.
We are committed to helping individuals and families stay informed, engaged, and connected to the rapidly evolving world of ALS research—while working to support and strengthen the research ecosystem over time.
ALS Research
At ALS Rhode Island, we believe that progress in ALS depends on more than funding alone—it requires connection, access, and collaboration.
We are committed to helping individuals and families stay informed, engaged, and connected to the rapidly evolving world of ALS research—while working to support and strengthen the research ecosystem over time.
Our Role in Research
We serve as a bridge between patients, clinicians, and the broader research community—making it easier to find opportunities, understand emerging science, and participate in research that moves the field forward.
Our work today focuses on:
- Connecting patients to clinical trials and research opportunities
- Providing clear, accessible education on ALS research and advancements
- Collaborating with national research organizations and networks
- Advocating for greater access and participation in research
As we grow, we are building toward expanding our ability to directly invest in research through fellowships, micro-grants, and partnerships.
A Collaborative Approach to Progress
Through the RI ALS Research Collaborative, we are developing a model that brings together:
- People living with ALS and their families
- Clinicians and care teams
- Academic and industry researchers
Our goal is to simplify the path to participation, accelerate discovery, and ensure the ALS community plays an active role in shaping research.
Expanding Impact Over Time
We are intentionally building a long-term approach to research support:
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Today
- Serving as a trusted resource for research information and access
- Sharing trial opportunities and educational resources
- Hosting webinars and research-focused programming
- Supporting research projects collaboratively through our membership with ALS United
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Next
- Expanding partnerships with research institutions
- Launching a research advisory structure
- Growing philanthropic support dedicated to research
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Future
- Supporting pilot studies and early-stage innovation through micro-grants
- Funding Rhode Island research fellowships for emerging investigators
- Contributing to larger, collaborative research initiatives
This phased approach allows us to act now while building toward meaningful financial investment in research.
Why This Matters
Research is where hope becomes progress.
Every clinical trial, every new discovery, and every advancement in care brings us closer to better treatments—and ultimately, a cure.
By increasing awareness, improving access, and strengthening collaboration, we are helping ensure that no opportunity for progress is missed.
Our Research Commitment
We are committed to advancing ALS research by:
Connecting Rhode Islanders to clinical trials and research opportunities
Sharing the latest research developments and educational resources
Collaborating with researchers and clinical partners
Supporting research through strategic investments, partnerships, and patient engagement
Additional ALS Research Resources
Register with us to access free, personalized services—available to all individuals living with ALS, regardless of insurance coverage or immigration status.
Once registered, you’ll meet with our Care Services Team, who will work closely with you to identify your current needs and plan for future support. Research shows that people with ALS who receive comprehensive, individualized care often experience a significantly improved quality of life.
For more information, email
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