I AM ALS State of the State, July 2023 – CEO Reflects on First 100 Days

I AM ALS State of the State

Five things I’ve learned in my first days as CEO, from the desk of Andrea Goodman

1. I am here – we are here – to support an existing foundation, one that was set through hard work, by many who came before me. As CEO, I will not reinvent the wheel or drastically change the foundation of this mission because the success of this model has been proven. Rather, we will continue on a path of more, faster, better, and more efficient — because we are always improving, and because we don’t have time to wait.

2. Incremental progress IS progress. And we know that because the people experiencing ALS say so. I’ve learned not to discount the importance of a bridge therapy or trial that keeps you alive in time for the next one. It could mean a slight improvement in quality of life. We’ll take it. Every win counts because it allows time for family, time for breath, time to live.

3. Equity is a critical lens. Without equitable access, scientific progress is meaningless. Further, we know that ALS doesn’t exist in a vacuum. It is a disease that affects individuals in the context of their lives, who exist in a system, and with previous and current experiences with bias, privilege, historical or community trauma, and/or discrimination. As an organization, we will always lead with a lens of equity and utilize a holistic, people-centered engagement and care model.

4. We are much more powerful together. Conversely, we know we are weaker with divisiveness. We will be more successful in our work together and ultimately save more lives if we: 

  • Lead with empathy rather than criticism, even when we have different approaches or opinions
  • Assume positive intent, knowing each one of us devotes ourselves to advocacy because of passion for the mission and not because of ego
  • Build trust and connections that allow for healthy discourse and compromise
  • Give space to share diverse and difficult experiences 

5. We all have a lot to learn, myself especially. Stay humble, stay curious, stay flexible. But always, always focused on our north star – cures for ALS.

We will find cures for ALS. The only question is when. That answer depends on you.

Stay informed on I AM ALS’ progress and what you can do to help us make hope real.

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