Robert Packard Center for ALS Research and ALS Society of Canada Announce Joint Research Funding Partnership

The ALS Society of Canada and the Robert Packard Center for ALS Research at Johns Hopkins are pleased to announce a collaboration to jointly fund preclinical basic science research in amyotrophic lateral sclerosis (ALS). This partnership underscores a shared commitment to advancing innovative ALS research and improving outcomes for people affected by the disease. It also marks the Packard Center’s first international co-funding partnership.

“We are excited to partner with the ALS Society of Canada on co-funding this important research,” said Dr. Christine Vande Velde, Packard Center Scientific Director and a Canadian neuroscientist. “This collaboration marks a significant step forward in our shared mission and represents the Packard Center’s first international co-funded grant. As a Canadian researcher, I am especially pleased to see this cross-border partnership bring together the strengths of our ALS research communities. We hope this collaboration will become a model for future funding efforts across the global ALS research community.”

The co-funded grant will support the work of Dr. Ji-Young Youn, an investigator at The Hospital for Sick Children (SickKids) in Toronto, Canada, on a project entitled Molecular Mechanisms of TDP-43 Dysfunction in Splicing Caused by Hyperphosphorylation. This project will examine whether a reversible chemical modification on TDP-43 (the same one that is typically detected in patient neurons) triggers TDP-43 dysfunction. The bigger picture is to reveal early molecular triggers and identify strategies to restore normal TDP-43 function in ALS.

“I have been fortunate to attend the annual Packard Center meeting for years and it is truly the most impressive collaborative network of fundamental research in the global ALS field,” said Dr. David Taylor, ALS Canada’s Chief Scientific Officer. “The opportunity to partner on funding for a Canadian scientist to work within this environment is very exciting for ALS Canada, and I hope we can continue to strengthen bridges between our organizations. I am certain that Dr. Youn’s work will bring a lot to the Packard Center and in turn, this will undoubtedly provide several avenues for her work to have even greater impact.”

ALS Canada is working to change what it means to live with ALS. Grounded in and informed by the Canadian ALS community, the organization responds to the urgent unmet need for life-changing treatments by investing in high-quality research that fuels scientific discovery, engaging industry partners, supporting increased clinical capacity, and advocating for equitable, affordable, and timely access to proven therapies. The organization empowers people affected by ALS to navigate the current realities of the disease and be informed consumers of information. Founded in 1977, ALS Canada is a registered charity whose work is powered by generous donors who share its vision of a world free of ALS.

The Robert Packard Center for ALS Research at Johns Hopkins is a global consortium dedicated to advancing ALS research. Operating as a nonprofit within Johns Hopkins and funded through philanthropy, the Center’s community includes more than 325 scientists from 65 institutions across 11 countries. The Center focuses on understanding ALS biology and developing therapies through a multidisciplinary, collaborative approach that accelerates high-quality research.

In 2025, The Packard Center introduced Packard Partnerships: Driving Innovation Through Collaboration — a co-funding initiative that brings together leading ALS organizations to jointly support cutting-edge ALS research projects. By pooling resources and expertise with partner organizations that share the commitment to advancing ALS research outcomes, Packard Partnerships embodies the collaborative spirit upon which the Center was founded. To date, the Packard Partnerships Program has enabled the co-funding of eight research projects with additional projects on the horizon. The Packard Center is grateful to its partners and excited to broaden its research portfolio while aligning with like-minded organizations united by a single mission: ending ALS.