I AM ALS Update on Five Years of Operations and a Future Ahead

A Note from the I AM ALS Board Treasurer 

Dear I AM ALS community,

It’s hard to believe January will mark five years since I AM ALS was founded. It feels like yesterday in some ways, and yet the impact we’ve seen in just a few years is unprecedented. I know when I joined the board at launch, this was an organization on a mission – and I wanted to be a part of that mission in honor of my father and all the ALS patients and caregivers out there, with us and not. It has been an honor to serve as the treasurer of the board of directors for the last 18 months, a role that I take very seriously. As we completed our 2022 financial audit and impact assessment, and we move into 2024 with an eye on a growing organization, I wanted to share some exciting observations and lessons learned:

1. The organization raised an incredible $1.6M in revenue during the 2022 fiscal year, with an expected ~ $2.4 million for 2023 (audit pending!), and a little over $10 million total since launch. 2022 mirrors the strong trajectory we’ve seen in fundraising over our history, as we look to support the significant resources we’ll need to continue to drive large-scale change in ALS. We are incredibly grateful for generous individual donors and foundation funders who are investing in the mission and believe- as we do- that our momentum will lead to treatments and cures.
2. I AM ALS is uniquely lucky to be able to spend most of our funds on programs – primarily advocacy, community organizing, and community support. We set up the organization virtually to keep overhead costs low and have been able to maintain it that way, with very low administrative expenses. With a laser focus on progress, we invest mostly in skilled professionals to move forward policy; top-tier specialists to navigate clients affected with ALS; and amazing community organizers to help mobilize the movement. The bulk of our spend goes to these individuals on the team across these three areas, plus outside specialists where needed. We also have a relatively small amount that goes to the basics of a nonprofit – insurance, office space, fees, and software. 
3. Due to our dedicated volunteer base – including community teams and a volunteer board of directors – we were thrilled to see significant results for the ALS community for the size of our operating budget and staff structure in 2022. Part of the magic of I AM ALS is that we build a small but incredibly talented team to help galvanize the broader community and volunteer groups, creating far more impact than our $2.3M budget would enable at a different organization. In this one calendar year alone, I AM ALS hosted over 120 events, convened 236 volunteers, served more than 550 clients, and procured $321 million in federal appropriations for ALS, among many other successes.

2024 will be an important inflection point for I AM ALS as we move from a start-up to a sustaining movement, and our strong financial and people/community foundation has prepared us to do so. I am tremendously grateful for my role in this work and for all of the important roles all of you reading this have played. We’re looking forward to the next chapter, together. Please reach out to me with any questions, anytime.

Sincerely, 

Peter Bowen
Treasurer and Member of the Board, I AM ALS