ALS center moving from Penn to Jefferson

Jefferson health system will open a multidisciplinary clinic for ALS patients on January 8 that will combine research and hands-on care in one center, the system announced this week.

The clinic will bring together doctors, social workers and rehabilitation specialists who work with patients with the deadly neurodegenerative disease. It will merge with the Joseph Weinberg Unit for ALS Research.  The new center will be called the Jefferson Weinberg ALS Center and will be directed by Piera Pasinelli, an ALS researcher.

"Our approach of merging research and clinical care is tailored around the patients' needs, which include immediate needs such as symptomatic care, and ultimate needs in finding effective treatments," Pasinelli said in a press release.

Staffers from the ALS Association Greater Philadelphia Chapter will work alongside Jefferson clinical workers, said Ellyn Phillips, the group's president. The association will supply at least three social workers, two mental health specialists and one assistive technology specialist.

For about the last 15 years, the association has had a similar relationship with Penn Medicine, Phillips said. Its employees will be on site at Penn just through the end of the year, but Penn ALS patients will continue to have access to the association's services.

Without being specific, Phillips said her group was paying Penn "an extraordinary amount of money" to supplement insurance payments so that staffers could spend more time with complex ALS patients. The group switched to Jefferson, she said, because a donor connected to that institution made that deal more attractive. "After much discussion, we thought it best to move our operation to Jefferson," she said.

Susan Phillips, senior vice president, public affairs, for Penn Medicine said the association's "withdrawal of funds" will not affect clinical operations at Penn's ALS Center.

She added that, "the center's research mission is fulfilled through a close collaboration with Penn's nationally-recognized Center for Neurodegenerative Disease Research (CNDR), enrolling patients in clinical trials and creating a connection between patients, clinicians and scientists that can lead us to new therapies to finally slow or halt the progression of ALS."

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