One-stop facility for ALS
A new center for the treatment of people with ALS, commonly known as Lou Gehrig’s disease, was officially unveiled Saturday at Cedars-Sinai Medical Center in Los Angeles.
The center offers a “one-stop shop” for patients with the disease, which attacks nerve cells in the brain and spinal cord, progressively weakening muscle cells.
The disease can result in paralysis in the legs and arms and is usually fatal two to five years after diagnosis, when the patient no longer has the muscle capacity to breathe.
People with ALS, or amyotrophic lateral sclerosis, must often see multiple specialists and therapists, usually located in different parts of a city, and coordinating care with a neurologist, physical therapist and speech therapist can be a difficult feat.
“Patients will be able to stay in one room, and all the physicians will be able to cycle through that room,” said Fred Fisher, president of the Greater Los Angeles chapter of the ALS Assn., which worked with the hospital to open the center.
Michael Gagner, 50, who has had ALS since 1999 and whose arms and legs are paralyzed, said at the event Saturday that such a coordinated care system would be attractive to him.
“Putting everything in one place is hugely convenient,” said Gagner, whose wife, Stacy Inman, has been active as the treasurer of the local ALS Assn. chapter.
Vera Lommatsch, 73, an ALS patient from Duarte, agreed with Gagner. Unable to talk, Lommatsch wrote on a yellow pad to a reporter about how her healthcare provider in Baldwin Park “has little, if any, resources for ALS.”
Officials say they hope the national ALS Assn., which is based in Calabasas, will designate the facility as an “ALS Center of Excellence.”
Such a designation recognizes facilities that provide exceptional care for ALS patients. They have a full array of specialists and conduct research, which can give patients the opportunity to participate in experimental drug tests.
There are no ALS Centers of Excellence in the Los Angeles area, even though there are 29 nationwide, including two in Northern California.
Loma Linda University in San Bernardino County is also interested in becoming an ALS Center of Excellence, Fisher said.
Although Saturday marked the official ribbon cutting, the center began caring for patients in September, and in January it began opening the clinic to patients twice a week.
The center currently serves 15 patients.
It is estimated that about 1,100 people in Los Angeles County, the Inland Empire and parts of Central California have ALS, Fisher said. An estimated 30,000 people in the United States have the disease.
Ian Wilmut, the Scottish scientist who supervised the cloning of Dolly the sheep in 1996 and who spoke at the ribbon cutting ceremony, said in an interview that stem cell research was crucial to better understanding how degenerative diseases such as ALS work.
“If you think of ALS, Parkinson’s and Alzheimer’s, there really is no effective treatment,” Wilmut said. Stem cell research may help contribute to new treatments, but, he cautioned, “it could take years.”
