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Hope Through Science: Jefferson's Fight Against ALS

"No disease is incurable. We just haven’t figured this one out yet." 

- Weinberg ALS Center Patient

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Currently, there is no cure.

The Jefferson Weinberg ALS Center at the Vickie & Jack Farber Institute for Neuroscience integrates research with clinical care in a patient-centric program designed to expand effective ALS treatment options. The Center’s offerings combine a multidisciplinary clinic, a clinical trial program with interventional and observational trials, and a research unit including five core and two affiliated laboratories.

This image shows a researcher in a white lab coat dropped a liquid into a test tube at the Weinberg ALS Center.

An ALS Association Certified Treatment Center of Excellence and a member of the NEALS Consortium, in the clinic the Weinberg Center brings together a team of experts in specialties including neurology, pulmonology, palliative care, respiratory, physical, speech, and occupational therapies, nutrition, genetic counseling, assistive technology, social work and mental health, as well as research coordinators and a laboratory researcher on hand to educate patients on the latest research developments.  

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.”

This image shows to hands wearing blue gloves holding a transparent test trip up to a light.

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.”

Hope is the current underlying everything Pasinelli and her colleagues work toward each and every day. “Hope is the purpose,” she shares. “I have a quote from our first clinic patient in my office that says, ‘No disease is incurable. We just haven’t figured this one out yet.’ I think that more than giving them hope, perhaps the patients are giving us hope.”

May is ALS Awareness Month, a time to raise awareness, show support for caregivers and their families, and shine a spotlight on those who dedicate their lives to finding a cure.

Make a gift today to support the Weinberg ALS Center at Jefferson.