Answer ALS Hosts Inaugural IgNight ALS in Washington, D.C.

WASHINGTON, D.C. [May 30, 2024]: Answer ALS hosted the inaugural IgNight ALS, a program that convened leaders from science, technology, policy, and culture to honor Steve Gleason and to highlight the spark that occurs when these disciplines work together on ALS.

Gleason signed copies of his new book, A Life Impossible: Living with ALS: Finding Peace and Wisdom Within a Fragile Existence, and read an excerpt using his new AI voice. He was introduced by political strategist James Carville. The evening’s theme, “the spark when science, creativity, and technology converge,” framed every element of the program.

A featured panel examined how cross-sector collaboration can speed progress in ALS discovery and care. Panelists included Klaus Romero, MD, MS, FCP (Chief Executive Officer, Critical Path Institute), Fred Humphries (Microsoft), Farhad Imam, MD, PhD (Gates Ventures), Jeffrey Rothstein, MD, PhD (Johns Hopkins Medicine), and Emily Baxi, PhD (Robert Packard Center for ALS Research at Johns Hopkins). Milan Karol moderated the discussion. Topics covered included the strategic use of large-scale, regulatory-grade datasets, practical applications of AI and advanced analytics, public–private partnership models that shorten timelines, and the importance of patient-centered design in both research and policy.

Poet Ephraim Nehemiah shared the lines, “They say if you rub your hands together fast enough, you can conduct your own heat. The spark we need is in the palm of our hands. Bridging the gap between impossible and possible is right here if we would just be willing to reach for it.”

A soul stirring performance by singer & songwriter Torrey B closed the evening and cemented the memory of the event in our minds. Answer ALS extends sincere appreciation to the speakers and contributors who made the inaugural IgNight ALS possible. Special thanks to Clare Durrett for creating this special event and to Stefan Beese for event design and production.

IgNight ALS was made possible through generous support from Jones Walker LLP, Mitsubishi Tanabe Pharma America, Critical Path Institute (C-Path), the Robert Packard Center for ALS Research at Johns Hopkins, AcuraStem, and Scientific American. Their sponsorship helped bring together voices from research, medicine, policy, industry, and the arts in one room, supported high-quality production and accessibility, and ensured broad representation across the ALS community. This type of committed partnership is essential for collaborations that turn ideas into work that matters.

Answer ALS is grateful to everyone who attended and contributed to the conversation in Washington, D.C. The inaugural IgNight ALS set a clear foundation for future gatherings that connect scientific rigor with real-world problem solving and creative communication.

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