Reposted from the NYTimes.comBy Christopher MaagPublished Sept. 6, 2023 Dan Doctoroff once had more power to decide what got built in New York City than anyone since Robert Moses. Now he must contend with a formidable disease. The man pulls the buttoned blue shirt down over his head and waits. His hands, bony, cratered, have lost their […]

Hundreds of people in the ALS community gathered in person and online for the 23rd Annual Packard Center Symposium. The meeting was a chance for researchers funded by Packard and others in the scientific world to come together and share their latest research to move the field forward as quickly as possible. More than just […]

ALS and FTD are complex diseases, with many steps in the disease pathways still unknown. But the two diseases share one major feature in common: In most cases of ALS, and most cases of FTD, vulnerable nerve cells accumulate abnormal clumps of a protein called TDP-43. Because of this common feature, researchers want to know […]

2023 has been a big year of change for the Packard Center. Besides a new Scientific Director, Packard has also hired a new Director, Operations and Administration. Although Tara Lincoln might be new to the Packard Center, she is not new to ALS.  For the past 12 years, Lincoln has worked behind the scenes at NEALS, […]

Earlier this year, the Packard Center welcomed its new Scientific Director, Dr. Christine Vande Velde. Dr. Vande Velde is a biochemist and cell biologist at the University of Montreal studying how RNA-binding proteins like TDP-43 contribute to ALS. She completed her postdoctoral studies in a Packard-funded lab and is excited to join the Packard team […]

The Food and Drug Administration granted accelerated approval of the drug tofersen for the treatment of SOD1-ALS. Developed by Biogen and Ionis, tofersen is an antisense oligonucleotide (ASO) that lowers SOD1 levels in the cell and, hopefully, can help to slow ALS progression. The approval requires the companies to further study tofersen and verify its clinical […]

In a new paper in PLOS Genetics, Packard researcher Jiou Wang identified a new mechanism through which C9orf72 may cause disease. In order to understand how the mutation in the gene C9orf72—the most common genetic cause of ALS—leads to disease, scientists also need to understand the protein’s normal function. Since the repeat expansion causes a […]

A new set of Answer ALS project data is now available through the Answer ALS Data Portal. A new set of Answer ALS project data is now available through the Answer ALS Data Portal! The release is a milestone not only for the program but for the field of ALS research in general. This is […]

Neuroscientists at Thomas Jefferson University have identified a new way that repeat expansion in the C9orf72 gene—the most common genetic cause of ALS and FTD—can contribute to ALS. In the years since scientists discovered the repeat expansion in the C9orf72 gene—the most common genetic cause of ALS and FTD—they have learned a lot about how […]

Results of a new Phase 2 randomized clinical trial in 137 patients with ALS showed that treatment with the drugs sodium phenylbutyrate and taurursodiol, combined together, could significantly slow functional decline over 24 weeks compared to placebo. Results of a new Phase 2 randomized clinical trial in 137 patients with ALS showed that treatment with […]