What’s New in 2024

I AM ALS community,

We are raring to go this January, humbled to be with all of you for another year, missing those who are no longer with us, and implementing a strong plan to build on I AM ALS’ impact over the last few years. The organization turns five on January 22, 2024 – officially Kindergarten age! In some ways we’re still a start-up organization and, yet, we deeply feel the clock ticking as we race against time. Stay tuned for a 2023 annual report highlighting key successes and lessons learned from the past year. In the meantime, I wanted to share our plans for 2024.

New Priorities!

Build a strategy to improve and quicken access & approval pipelines. We are counting on scientific progress coming down the pike and need to ready the system for drug development, scientific review, approval, and access.
Launch a Cures Coalition to bring the ALS and neurodegenerative community together and collaboratively improve national understanding, visibility, energy, and compassion around ALS and related diseases.
Host an inaugural ALS Community Summit! Building on the May flag ceremony, this event will now include more time for connecting and networking; advocate-led training sessions, story sharing, and much more. More info and registration coming soon!
Scale the movement and our support services through the development of a peer support specialist program, where trained volunteers will be able to provide client support and help us tackle the growing pool of requests.
Push for federal improvements that help families, including increases in research and expanded access dollars, plus stronger access for veterans and home health.

Still, I AM ALS will deliver all that we typically do and more than these activities in 2024, thanks to our incredible volunteer community, dedicated funders, and a small-but-mighty staff.

New board leadership!

After five years of incredible service that led I AM ALS to unprecedented impact, Louise Langheier has stepped out of her role as board chair and welcomed Peter Bowen, former Treasurer, to the seat.

Peter is eager to take I AM ALS to the next level! He has been an active board member since 2019, lost his father to ALS in 2007, and is a partner at the global strategy consulting firm Bain & Company, where he focuses on technology.

Jenny Fortner has stepped into the role of Treasurer, after losing her mom to ALS recently, retiring from Goldman Sachs as their Director of Impact and Engagement for the Goldman Sachs Philanthropy Fund, and continuing to increase her work in ALS awareness and advocacy, including as a board member of Hop On A Cure.

Peggy Plews-Ogan has taken on the board officer role of Secretary, in addition to her many community hats. Peggy is a Professor of Medicine at the University of Virginia School of Medicine and the Co-Director of the Wisdom and Wellbeing program. Her husband Jim was diagnosed with ALS in 2021 and they have devoted their lives to ALS advocacy work ever since.

Louise will continue her service on the board alongside the rest of the incredible members.

We are so grateful for their commitment to I AM ALS. Please join me in welcoming Peter, Jenny, and Peggy to their new officer roles. We have lots to do, so let’s get going and make 2024 our best year yet!

~Andrea Goodman
CEO