The world is closer to understanding the causes of ALS. However, the most important power source in the fight to find medicine these days is…patients themselves. As never before, patients are getting involved with their neurologists, providing them with blood and skin samples, their natural histories, and other critical information, all of which will lead to treatments. Even five years ago, ALS researchers couldn’t learn too much from patient samples. That has changed, with major advances in ALS research and technology. Thanks to the recent participation of people living with ALS, experts have discovered new ALS genes…a host of new therapeutic targets…and the ability to create stem cell models of ALS, or ALS in a Dish, which they can use to study a particular patient’s disease. Last month, Project ALS kicked off the ALS Living Library at Massachusetts General Hospital. Dr. James Berry directs the efforts to catalog, characterize and share with researchers, data from samples donated by ALS patients. In a related effort, Dr. Neil Shneider, director of the ALS clinic at Columbia in New York, has kicked off a study of families touched by ALS. For more information on how your family can participate in research, please contact Project ALS.
In 2020, Cathy and Richard called Project ALS after hearing about the development of a novel antisense oligonucleotide (ASO) therapy for people living with FUS ALS. So was born NextGen ALS, a Weber family initiative in collaboration with Project ALS that is committed to raising funds for targeted research toward treatments and cures for genetic forms of ALS.