Our national network of 63 Certified Treatment Centers of Excellence (CTCEs) provides robust, expert multidisciplinary ALS care and services in a supportive atmosphere, emphasizing hope and quality of life. Studies show attending a multidisciplinary clinic can extend survival, increase quality of life, and improve access to potential therapies.
CTCEs bring together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.
Teams typically include a neurologist, a physical therapist, an occupational therapist, a respiratory therapist, a nurse, a dietitian, a speech-language pathologist, a social worker, a mental health professional, and a liaison from The ALS Association.
Thanks to donations from the ALS Ice Bucket Challenge, The ALS Association has increased the number of CTCEs, as well as the size of its annual grants to each one. This is the third in an ongoing series of CTCE spotlights.
We talked with Dr. Catherine Lomen-Hoerth, director of the ALS Treatment and Research Center at University of California San Francisco (UCSF), to learn about her CTCE, which serves approximately 300 people.
The ALS Treatment and Research Center at UCSF was founded in 1993 and certified by The ALS Association in 2001.
ALS Treatment and Research Center at University of California San Francisco
San Francisco, California
Director: Dr. Catherine Lomen-Hoerth
Why did you want to work with people living with ALS?
I knew people in my neighborhood growing up who had ALS and it struck me as a terrible disease. I wanted to be involved in trying to help after becoming a doctor.
Your clinic’s history includes a unique connection to ALS. Can you tell us more about that?
Our clinic’s founder, Dr. Richard K. Olney, dedicated his life to helping people with ALS and their families for over 35 years and was an internationally renowned pioneer in ALS research and care. Ironically, he himself was diagnosed with ALS in 2004, but was always open about his diagnosis and continued to share his opinions as an ALS physician-researcher as long as he could. Dr. Olney died from the disease in 2012, at the age of 64.
His daughter, Amy, is an occupational therapist in Colorado and wrote an invaluable manual for managing activities for daily living for people with ALS that is in use today. His son, Nick, decided to focus on neurology after his father’s diagnosis. He worked here at the clinic after finishing his fellowship at UCSF and is now the co-director of the Providence ALS Center of Excellence in Portland, Oregon.
Dr. Olney not only inspired his children to make an impact through medicine, but he also deepened our clinic team’s compassion for people with ALS and their families.
We’re constantly inspired by people living with ALS. How do your patients inspire you?
I love watching patients and families leading fuller lives because of [their] ALS— taking special trips, reuniting with family, etc. Having a shorter timeline for your life focuses priorities on what is most important.
What can a person expect during their first multidisciplinary clinic visit?
We have patients see the full multidisciplinary team starting on the day of diagnosis to get baseline measurements and meet everyone. The day of diagnosis is typically the hardest day for an ALS patient and their family, and we want to make sure they feel supported.
In what types of ALS research is your center involved?
We’re involved in a variety of clinical trials to offer experimental treatments to our patients. We also have a project looking for a biomarker to lead to earlier diagnoses and a more accurate prediction of prognosis.
I’m interested in end-of-life care and views, and we’re writing a paper now about our patients’ views on the new end-of-life act approved in California in 2016.
Lastly, I’ve been very interested in the overlap with ALS and Frontal Temporal Dementia (FTD) and continue to try to design better screening tools.
Caregivers are vital for people living with ALS and family members often serve as primary caregivers. Does your center offer support services specifically for caregivers?
Our social worker, who is provided by The ALS Association Golden West Chapter, meets with every patient and family at every visit and meets alone with the caregiver, as needed, for extra support. We refer patients to The ALS Association care managers and support groups for local support. We also have a palliative care team to support the patient and family.
What unique offerings or programs does your center provide?
Along with our palliative care team, I offer telemedicine services that patients can use with any phone or laptop that has a video camera. We have three satellite clinics in Modesto, Monterey, and Santa Rosa that we go to twice a year at each location. We take our full ALS multidisciplinary team and stay for two days at each site.
How does The ALS Association help you serve people with ALS and their families?
I couldn’t see people with ALS and their families without the support of The ALS Association to provide a social worker, fund our center, connect patients with local resources, and fund our satellite clinics. I’m a former board member of the Golden West Chapter and currently serve as an advisory trustee there. Over the years, many clinic staff and I have participated in the Chapter’s many Walk to Defeat ALS events and the Napa Valley Ride to Defeat ALS.