Robert Packard Center for ALS Research and Active Against ALS Joint Research Funding Partnership

The Robert Packard Center for ALS Research at Johns Hopkins and Active Against ALS are pleased to announce a collaboration to jointly fund two preclinical research projects on amyotrophic lateral sclerosis (ALS). This partnership underscores a mutual commitment to driving innovative and fundamental ALS research and improving outcomes for those impacted by the disease.

“We are excited to partner with Active Against ALS on co-funding these two important projects,” said Dr. Christine Vande Velde, Packard Center Scientific Director. “This collaboration marks a significant step forward in our shared mission. Teamwork within the lab, combined with support from other ALS organizations, is a foundational pillar of the Packard Center. By pursuing breakthrough research that deepens our understanding of ALS, we move closer to changing the trajectory of this disease. We hope this partnership will become a model for future collaborative funding efforts across the ALS research community.”

The co-funded grant will support two research projects.  The first, led by Dr. Sami Barmada (University of Michigan) and Dr. Eran Hornstein (Weizmann Institute) is a project entitled Dissecting the Consequences of Cytoplasmic TDP-43 Mislocalization for Neurodegenerative Diseases. This project aims to developed unique cell lines in which TDP-43 location is governed by light, useing these cells to clarify the consequences of TDP-43 relocation, while also highlighting new biomarkers and therapeutics. The second project will support the research of Dr. John Landers (UMASS Chan Medical School).  Dr. Landers’ project, entitled Development of Mutant Specific ASOs for TDP-43 and KIF5A, aims to develop potential therapeutics for ALS/FTD resulting from mutations in the TARDBP and KIF5A genes.

Active Against ALS’s Co-Chair, Jennifer Collins, stated, “Forming this partnership with the Packard Center represents a powerful step forward in our mission. By co-funding these two research projects, we are combining our community’s fundraising heart with their vast scientific network. We are incredibly proud to unite our resources to accelerate the discovery of effective treatments and, ultimately, a cure for ALS.”

Founded in 2008 in Ann Arbor, Michigan, Active Against ALS is a grassroots, nonprofit organization whose mission is to raise funds for research toward effective treatments and ultimately a cure for ALS (Lou Gehrig’s Disease). They are dedicated to increasing awareness of the disease, encouraging physical activity, and building a compassionate community.

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 over 325 scientists from 65 institutions across 11 countries. It 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 our partners and excited to broaden its research portfolio while aligning with like-minded organizations united by a single mission: ending ALS.