Collaboration for ALS Research: Joint Funding by Packard Center and ALS United
Joint Research Funding Partnership to Propel ALS Studies
On October 28, 2025, an exciting announcement came forth from the Robert Packard Center for ALS Research at Johns Hopkins University in tandem with ALS United. The two esteemed organizations are launching a collaborative effort to jointly fund essential preclinical basic science research for amyotrophic lateral sclerosis, known more commonly as ALS. This partnership marks a deliberate and committed stride towards unlocking critical insights into the disease that greatly affects many lives.
Christine Vande Velde, the Scientific Director of the Packard Center, expressed her enthusiasm about the collaboration: “We are excited to partner with ALS United on co-funding this important research. Collaboration, both within the lab and amongst like-minded ALS organizations, is a cornerstone of the Packard Center.” The initiative solely aims to enhance the quest for understanding the complexities of ALS, with the hope that the findings will incite transformative changes in treating individuals suffering from this relentless neurodegenerative disease.
The co-funded research grant is aimed at supporting groundbreaking work helmed by Dr. Albert La Spada from the University of California, Irvine and Dr. Sandrine Da Cruz from VIB – KU Leuven. Their project, focused on investigating Alternative Polyadenylation-Driven Subcellular RNA Mislocalization in TDP-43 Proteinopathies, seeks to discover whether dysfunction in TDP-43 can cause RNA mislocalization incidents due to alternative polyadenylation processes. By examining these processes, they aspire to unveil novel pathways contributing to ALS’s progression, potentially bringing forth new therapeutic targets that could help reshape treatment plans for affected individuals.
Jerry Dawson, the President and CEO of ALS United, elaborated on the significance of their strategic research partnerships. He commented, “The partnership with the Packard Center demonstrates ALS United's commitment to strategic research collaboration. Our members have been funding ALS research for decades, and we've learned that partnering with established programs like the Packard Center allows us to maximize impact while accessing world-class scientific expertise.” This partnership is but one facet of a wide array of initiatives through which various member organizations are collectively engaged in enhancing the search for promising treatment alternatives and cures for ALS.
ALS United operates as a nationwide coalition comprising 15 independent nonprofit organizations, each devoted to supporting the ALS community. The assemblage of member organizations, which includes ALS Arizona, ALS Network, ALS New Mexico, and many others, serves a significant portion of the approximately 160,000 Americans living with ALS, providing tailored, community-oriented support. Together, these organizations have facilitated funding totaling millions of dollars for ALS research through collaborations with esteemed programs, including the Accelerating Medicines Partnership for ALS® and the Northeast ALS Consortium.
The Robert Packard Center for ALS Research stands as a leading entity on a global scale, dedicated to advancing our understanding of ALS and developing innovative therapies. Functioning as a nonprofit within the Johns Hopkins ecosystem, the Center boasts a diverse network of over 325 scientists hailing from 65 institutions across 11 countries. Their multifaceted, collaborative approach emphasizes a high-quality research atmosphere aimed at deciphering ALS biology, while also propelling therapy development forward.
This exemplary partnership showcases a unified front determined to tackle the challenges posed by ALS head-on. Combining resources, expertise, and a shared commitment to revolutionary discoveries, the Packard Center and ALS United are poised to bring renewed hope to those grappling with ALS, making strides towards a future rich with promising possibilities. With ongoing collaborations blossoming across the ALS research community, the potential for groundbreaking advancements in understanding and treating ALS appears within reach, igniting a fervent optimism for current and future generations battling this challenging disease.