An ALS diagnosis is devastating, not only to the patient but also to their family and the community that surrounds them. “It takes a village to care for these patients,” says Piera Pasinelli, PhD, the Frances and Joseph Weinberg Professor of Neuroscience and founder and director of the Weinberg ALS Center. “They deserve this concierge approach to patient care and an honest education in research. Our vision is to provide a one-stop personalized approach tailored to each patient's needs. And for such a devastating disease, these needs also include active participation in research.”
The Weinberg Center’s patients are integral to the Center’s ongoing research. “Our patients are our daily inspiration,” Pasinelli says. “They know that participating in research, even clinical trials, is not for themselves, but they want to help the patients of the future. Participating in research gives patients purpose and hope, and helps us by allowing us to study the disease as it truly occurs in people, track its progression, and tailor insights to each patient.”
Philanthropy is critical to the Weinberg Center’s ongoing mission. “A disease that doesn’t have a cure is a shared cause,” she explains. “ALS is an orphan disease, often misunderstood and financially demanding for everyone involved, from patients to researchers. Philanthropy helps us invest in technology that improves care, provides better access to trials, and enhances quality of life. In the lab, it enables us to invest in new techniques and technologies that allow our research to continue.”