The National Institute of Neurological Disorders and Stroke (NINDS), seeks to include people with lived experience of neurological disorders in the planning, execution, and communication of research.
People with lived experience of neurological disorders includes those who are: diagnosed, at risk, caregivers and loved ones, and those who have lost loved ones to ALS.
As part of that effort to include people with lived experience in the conversation, design and decision making of research, we routinely reach out to people with experience of specific neurological disorders to ask for self-nominations to join working groups, planning committees, advisory groups, and other projects. These groups often include a diverse representation of clinical, translational, and basic science experts, non-profit and advocacy organizations, as well as people with lived experience.
We are seeking to grow our network of people with lived experience of ALS to provide an opportunity to share perspectives and to join in conversations and potential working groups. If you have not already joined our list and would like to, you may join by providing some general background and contact information in the following form: https://forms.office.com/g/fdLVZEehRM. This is a general NINDS engagement form not specific to ALS. If you have questions about the form or if it does not work with your assistive tech, please contact Rebekah.Corlew@nih.gov for an alternative.