I AM ALS ‘Playbook’ Aims to Foster Patient Advocacy Groups

Joana Carvalho, PhD avatar

by Joana Carvalho, PhD |

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I AM ALS, a nonprofit working for people affected by amyotrophic lateral sclerosis (ALS), is offering a guide to help others who want to follow in its footsteps — creating a movement that mobilizes and unites a community against a disease, it announced in a press release.

This free and interactive, step-by-step resource, called the Organizing Playbook, was launched days ahead of Rare Disease Day, taking place on Feb. 28 this year.

The guide builds on the nonprofit’s own experience with initiating and driving a movement to end ALS. It incorporates what I AM ALS has learned over time, including the best methods of sourcing content, and dealing with challenges.

This interactive tool, created in partnership and with the financial support of the Chan Zuckerberg Initiative, also incorporates feedback from the ALS community and other rare disease communities that were gathered through interviews.

The Organizing Playbook is divided by categories: Outreach/Awareness, Research, Advocacy, Empowerment, and Opportunities. Each category offers recommendations on best practices, as well as those steps that are best not to take.

Playbook users may sign up for access to worksheets that accompany each category, helping them to better develop ideas that might drive their movement.

I AM ALS aims to make its Organizing Playbook a “living curated tool” that other organizations can use as an example and source of inspiration. It welcomes feedback from users to make it as wide, rich, and comprehensive as possible.

Founded in 2019 by Brian Wallach, who has ALS, and his wife Sandra Abrevaya, I AM ALS aims to empower patient advocates to raise disease awareness and promote movements that support work toward a cure for ALS. The group’s 2020 research awards totaled $500,000, and included a grant supporting expanded access to a treatment being tested in the HEALEY ALS Platform Trial.