I AM ALS Expanding Efforts Into Research, Patient Support

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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I AM ALS, a nonprofit dedicated to helping people affected by amyotrophic lateral sclerosis (ALS), is expanding its efforts in scientific research and public policy.

The organization’s new Science and Policy program will include three key focuses, according to a press release emailed to ALS News Today.

First, the program aims to increase the speed, efficiency, and transparency of research into this disease and into therapy development for ALS.

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Second, the nonprofit will push for policies and programs that support ALS patients, at both the national and local level. A particular goal of this focus is to make it easier for patients to access promising therapies.

Its third focus is ensuring that people with ALS have an authentic seat at the table, so that their voices will be heard when decisions are made.

To lead the new initiative, I AM ALS has tapped Megan B. Miller as its new director of science and policy.

Miller, who holds a PhD in biomedical sciences and completed a postdoctoral fellowship at the Yale School of Medicine, had previously worked at the U.S. Agency for International Development (USAID) as a program officer and strategic advisor for research. At USAID, Miller oversaw scientific collaborations around the world, and worked to form connections between the research community and stakeholders outside of academia.

“Under Dr. Miller’s direction, I AM ALS aims to galvanize the community of people impacted by ALS, researchers, biopharmaceutical companies, organizations and government agencies around a unified approach to end ALS,” the nonprofit stated in the release.

The organization stressed that, as with all its initiatives, this work will be driven mainly by people living with ALS, taking a patient-centric approach.

I AM ALS was founded in 2019 by Brian Wallach, who has ALS, and his wife Sandra Abrevaya. In the years since, the organization has been working to improve the lives of ALS patients through its initiatives, and has contributed to an $83 million increase in U.S. government funding for ALS research.

In 2020, I AM ALS teamed up with The ALS Association to support research into biomarkers associated with BrainStorm Cell Therapeutics’ investigational ALS stem cell therapy NurOwn.

The organization also released a playbook this year for others wanting to create a movement dedicated to fighting a disease.