UCSF Expands Access for People with ALS

The ALS Treatment and Research Center, a clinical practice of the Department of Neurology at UC San Francisco and an ALS Association-certified Center of Excellence, is expanding its support for the community of people facing amyotrophic lateral sclerosis (ALS).

In partnership with The ALS Association Golden West Chapter, the Center is expanding direct service through a new satellite clinic in Santa Rosa, Calif. In addition, the UCSF Department of Neurology is launching a pilot program in telemedicine technology that will eventually allow people with ALS throughout California to access the Center’s services from their homes.

ALS, also known as Lou Gehrig’s disease, is a fatal neurodegenerative disease that attacks nerve cells in the spinal cord and brain. People with ALS progressively lose their ability to move, speak, swallow, and eventually their ability to breathe, while all five senses continue to function normally.

ALS can strike men or women of any age, though, for reasons that are not fully understood, military veterans are at twice the risk as the general population. The average life expectancy of a person with ALS is two to five years from diagnosis. There is no known cause and no cure. In the later stages of the disease, the annual costs for home care, coupled with the cost of necessary equipment, can exceed $200,000 per year.

There are only 34 Centers of Excellence certified by The ALS Association in the United States. Each employs multidisciplinary clinic teams of healthcare professionals from several fields— including neurology, nursing, nutrition, physical therapy, occupational therapy, speech therapy and social work—to provide the highest standard of care for people with ALS.

With key support from The ALS Association Golden West Chapter, UCSF began offering a satellite multidisciplinary clinic in Monterey, Calif. in 2005, to better serve the southern Bay Area and Central Coast ALS community. A second satellite clinic, which will offer services at six-month intervals, has begun operations at 100 Brookwood Ave. in Santa Rosa, to help people with ALS in the northern Bay Area receive services closer to home. The first Santa Rosa clinic was held in March, and the next will be held October 23 and 24, 2014.

“Multidisciplinary clinics such as ours at UCSF Medical Center improve the quality of life for people with ALS and prolong survival, but it can be very difficult for families to travel extended distances to come to these clinics,” said Catherine Lomen-Hoerth, MD, PhD, medical director of the ALS Treatment and Research Center at UCSF. “This support from The ALS Association Golden West Chapter for our satellite clinics greatly increases access to care for people throughout the Bay Area living with ALS.”

Fred Fisher, president and CEO of The ALS Association Golden West Chapter, said, “We provide these satellite clinics because we realize it is often an obstacle for people with ALS and their families to come to San Francisco. To remedy this, we bring the medical experts into their local communities.”

UCSF’s Department of Neurology has begun piloting a telemedicine program, using video conferencing for clinical consultations. As long as a person resides in California and has a computer with a camera, he or she will be able to make use of this service. Some of the first sessions of the program will be for people with ALS, creating many additional opportunities for appointments each month.

“There currently isn’t enough support for people living with ALS and their families,” said Fisher. “We are excited for the opportunity to work with our clinic partners as they continue to develop their programs and services. While at this time there is no known cure for ALS, access to excellent, multidisciplinary care has been shown to lengthen and improve people’s quality of life significantly.”

All clinical appointments are scheduled through the ALS Treatment and Research Center at UCSF. For more information, please call 415-353-2122.

UCSF is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. It includes top-ranked graduate schools of dentistry, medicine, nursing and pharmacy, a graduate division with nationally renowned programs in basic biomedical, translational and population sciences, as well as a preeminent biomedical research enterprise and two top-ranked hospitals, UCSF Medical Center and UCSF Benioff Children’s Hospital.

About The ALS Association Golden West Chapter

The mission of The ALS Association is to lead the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support. We are a member of the National Health Council and the only national organization solely dedicated to fighting ALS on all fronts while directly serving the ALS community. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. The Golden West Chapter serves people with ALS and their families in 31 counties throughout California and in the state of Hawaii.