The ALS Clinical Research Learning Institute® (CRLI) is a two-day program designed to provide education and training to individuals impacted by ALS who are interested in clinical research and the therapy development process.
Organized by the Northeast ALS Consortium (NEALS), the ALS Clinical Research Learning Institute® (CRLI) program offers a comprehensive curriculum covering various aspects of ALS clinical research, including study design, data analysis, ethical considerations, and community engagement opportunities. Individuals who complete the training program are considered ALS Research Ambassadors and are eligible to participate in opportunities that influence and improve the ALS research process.
The ALS CRLI was launched in 2011 by Richard Bedlack, MD, PhD (Duke ALS Clinic) and Merit Cudkowicz, MD, MSc (Sean M. Healey & AMG Center for ALS at Mass General Hospital) to empower people living with ALS and their loved ones with essential knowledge about clinical research. Through education and collaboration, the ALS CRLI plays a crucial role in fostering a community of engaged ALS Research Ambassadors dedicated to including lived experience in ALS research. Click here to read more about the ALS CRLI program.
If you are interested in hosting an ALS Clinical Research Learning Institute®, please contact email hidden; JavaScript is required for more information.
Watch a presentation from the 2020 CRLI to learn more about the goals of the program and what it means to be an ALS Research Ambassador®.
The ALS-CRLI program, organized by the Robert Packard Center for ALS Research at Johns Hopkins in partnership with the Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS), is now accepting applications. This program offers valuable education and training in clinical research and therapy development for individuals affected by ALS. Participants who complete the program become ALS Research Ambassadors, with opportunities to influence ALS research.
The 2024 ALS-CRLI event will take place on September 19th and 20th in Baltimore, MD, specifically for residents of the Baltimore/Washington, DC Metro Area. If you or someone you know is impacted by ALS and hasn't attended a CRLI event before, we encourage you to apply!
Application Deadline: August 9, 2024
Apply Here
There are over 600 ALS Research Ambassadors that have completed the ALS CRLI education program. To learn more about the projects the ALS Research Ambassadors are working on, click here to watch a Research Ambassador Panel discussion presented at the 2023 Annual NEALS Meeting. You can also follow the NEALS ALS Research Ambassadors on Facebook.
ALS speaking engagement (fundraiser, support group, political event, etc.)
Organization of or participation in an ALS event
Interview (TV, radio, web or print)
Speaking or writing to a congressman
ALS video (YouTube, social media, webinar, etc.)
Creation of or contribution to a website, blog or social media page
Published article/column (web or print)
Serving on an ALS committee or board
Mentoring (PALS or CALS)
Other
Click here to access your Outreach Tracker
If you do not already have a Research Ambassador account you must first register and create your Tracker.