Help the Shape the Future of ALS Research

People living with ALS bring unique expertise that cannot be replicated by researchers, clinicians, industry, or regulators. We are seeking individuals living with ALS to contribute directly to a highly collaborative public-private partnership dedicated to accelerating ALS research and therapeutic development. 

People with lived experience with ALS serve as members of technical working groups and help ensure that research priorities, study designs, data collection, and outcome measures reflect the perspectives and needs of those most impacted by ALS. 

This is an opportunity to:

• Shape groundbreaking ALS research initiatives
• Ensure the lived experience perspective informs scientific decision-making
• Contribute to discussions that may improve future clinical trials and drug development
• Collaborate with researchers, clinicians, research funders, regulators, industry representatives, and advocacy leaders
• Help accelerate progress toward effective treatments for ALS

While our current priority is recruiting additional people living with ALS, we also have select opportunities for caregivers, family members, individuals at genetic risk for ALS, and others with relevant lived experience to participate. Read on to learn more and express interest via the form below.

What Does Participation Look Like? 

Participants join one of several active working groups and contribute their perspectives during virtual meetings and discussions. Members are encouraged to: 

• Share insights based on their lived experience with ALS
• Review and provide feedback on proposed research activities
• Help identify barriers, challenges, and priorities that researchers may overlook
• Advise on approaches that are meaningful, feasible, and relevant to someone with lived experience of ALS
• Serve as full members of multidisciplinary teams that include scientific, clinical, regulatory, and industry experts

No scientific or medical background is required, and participation is accessible via voice, text, and/or Eyegaze. Your experience and perspective are valuable contributions.

What This Opportunity Is Not 

• A support group
• A clinical care or patient services program
• A clinical trial or treatment program
• Individual medical advice
• A fundraising or advocacy role

The primary purpose is to contribute lived experience expertise to ALS research and development activities. 

Who Are We Looking For? 

We are seeking individuals who: 

• Are living with ALS and willing to share their experiences and perspectives
• Are interested in learning about and contributing to ALS research efforts
• Can participate in virtual meetings and occasional workgroup activities
• Can commit a few hours per month to attend and prepare for meetings
• Value collaboration and respectful discussion

We welcome participation from the global ALS community, though most activities take place during U.S. business hours. High-level knowledge of ALS research is helpful, but not required, and orientation will be provided. 

Why Lived Experience Matters 

People living with ALS, caregivers, family members, and others affected by the disease offer essential expertise that helps researchers focus on what matters most. 

Their contributions help ensure that research priorities, outcome measures, technologies, and data collection strategies are meaningful, practical, and responsive to community needs. 

Lived experience participants are embedded throughout the partnership and contribute directly to the development and implementation of research activities. 

About the ALS Public-Private Partnership 

The Accelerating Access to Critical Therapies for ALS Act (ACT for ALS) directed the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA) to establish a public-private partnership (PPP) focused on accelerating progress in ALS and other rare neurodegenerative diseases. Leading partners in this collaborative effort include: 

• Critical Path for Rare Neurodegenerative Diseases (CP-RND), led by Critical Path Institute (C-Path)
• Accelerating Medicines Partnership® ALS (AMP® ALS), coordinated by the Foundation for the NIH (FNIH)
• Access for All in ALS (ALL ALS) Consortium, an NIH-funded natural history study that collects clinical data and biospecimens over time

Together, these efforts bring researchers, regulators, industry, nonprofit organizations, and people with lived experience together around a shared goal: To accelerate the development of effective treatments for people living with ALS and those at risk of developing ALS.

Working Groups 

The PPP advances priority areas of ALS research through a series of action-oriented working groups. Please find an overview of currently active working groups below. Participation in working groups involves participation in virtual meetings and some independent work to prepare for meetings. Note that meeting length and cadence is variable and may shift over time as needs evolve. 

Clinical Outcome Assessments (COAs) Working Group 

Works to improve the tools used to measure disease progression and treatment benefit in clinical trials. Current priorities include qualitative research to better understand the aspects of health, function, and daily life that matter most to people living with ALS. The overarching COA group meets quarterly for one hour, with the following subgroups meeting more frequently.

• ALSFRS-R Statistical Analysis Group. Standardizing analysis and interpretation of ALSFRS-R data.
• Measurements of Respiratory Function Group. Standardizing measures of respiratory function in ALS.
• Digital Health Technologies Group. Exploring possibilities for digitally-derived biomarkers and/or COAs using existing data from wearable devices.

Biomarkers & Natural History Working Group 

Advances research on biological markers that may improve diagnosis, prognosis, patient stratification, and therapeutic evaluation. The group also guides efforts to better understand how ALS progresses over time through longitudinal natural history research. Meets monthly for one hour.

Data Platform Working Group

Supports the development of data infrastructure and resources that enable researchers to share, integrate, and analyze ALS data more effectively. Activities include development and management of the ALS Knowledge Portal, integration with C-Path’s Rare Disease Cures Accelerator Data Analytics Platform (RDCA-DAP), and development of analytical tools. Meets every other month for one hour.

Communications Working Group 

Helps communicate partnership activities, research progress and publications, and opportunities for engagement with the broader ALS community, including through the AMP® ALS Newsletter. Meets quarterly for one hour.

Interested in Learning More? 

If you are interested in participating, want to learn more, please fill out of the following form. Be sure to read the Privacy and Consent Notice before you submit.

You can also reach out directly to:   

Megan Miller, C-Path Director of Outreach: mmiller@c-path.org

Elio Peraza, NINDS ALS Program Coordinator: elio.peraza@nih.gov