Reprinted with permission: giving.jhu.eduApril 15, 2025, By Erin Torres This year, the Robert Packard Center for ALS Research at Johns Hopkins celebrates 25 years of work. The Packard Center is a place like no other, operating through a unique model that transcends institutional borders to share knowledge and fuel progress around the globe. And this model is […]

The Packard Center mourns the loss of John Feinstein, the acclaimed sports commentator and author whose influence extended far beyond his celebrated 47-year career at The Washington Post and his 48 bestselling books. Feinstein formed a special bond with the Packard Center through his advocacy for ALS research. His powerful book, “Caddy for Life,” which […]

The Packard Center recently received a transformative $300,000 grant from Hop On A Cure, supporting four future critical research initiatives in the fight against ALS. This generous contribution reflects the organization’s dedicated mission to support research to prevent, reverse, and cure ALS while raising awareness, building a compassionate community, and unleashing the healing power of […]

In a new paper published in Neuron, Gene Yeo, PhD (University of California, San Diego), in collaboration with Packard Center founder, Dr. Jeffrey Rothstein and Packard Center investigator Dr. Alyssa Coyne used CRISPR based knockdown to identify novel factors that modulate the subcellular distribution of CHMP7. In doing so, they identified specific splicing complex proteins that […]

The Packard Center development office will be closed for the winter holidays from December 24, 2024, through January 1, 2025.  Click here to learn more about the Packard Center’s holiday hours and ways you can make a year-end gift. Holiday Hours The Packard Center development office will be closed for the winter holidays from December […]

Tara Lincoln, Director of Operations & Administration at the Packard Center, recently participated in the 2024 Les Turner Symposium on ALS, held at Northwestern Memorial Hospital in Chicago. The annual symposium brought together a distinguished group of ALS experts, including leading scientists, clinicians, and individuals directly impacted by the disease. Of special note, two members […]

The Packard Center team made a significant impact at the 35th International Symposium on ALS/MND, the world’s largest medical and scientific conference dedicated to motor neuron disease. With over 1,000 global delegates, the event showcased the cutting-edge research and collaborative spirit of the ALS research community. Longitude Prize Launch Executive Director Dr. Jeff Rothstein unveiled […]

In a recent paper, published in The Journal of Clinical Investigation, Packard Center investigators and members of the Center’s Scientific Advisory Board, Lindsey Hayes, PhD and Jiou Wang, MD, PhD showed important proof-of-principle experiments that C9orf72 expansions, which exhibits higher-order secondary structures that can be difficult to target, are amenable to genome editing using a newly engineered approach. […]

The Robert Packard Center for ALS Research recently hosted its first ALS Clinical Research Learning Institute® (CRLI) at Johns Hopkins, welcoming 22 people with lived ALS experience to Baltimore. Organized by the Northeast ALS Consortium (NEALS), the ALS CRLI program provides comprehensive education on ALS clinical research, covering topics such as study design, data analysis, […]

Did you know that only 32% of Americans have a will and 14% of U.S. adults give a lack of assets as their reasoning for a lack of estate planning?* Estate planning is for everyone – not just the rich. Every gift makes a difference and it provides a vehicle for taking care of loved […]