Thought leaders and scientific community collaborators like Clive Svendsen, PhD, help the ALS Network pursue moonshots and accelerate the search for effective prevention strategies, treatments, and cures for ALS every day.
Dr. Svendsen is the executive director of the Board of Governors Regenerative Medicine Institute at Cedar-Sinai Medical Center, and leads a research lab largely focused on better understanding ALS and advancing clinical trials. In 2010, Dr. Svendsen was the winner of the Sheila Essey Award for ALS Research. That same year, he agreed to serve as a volunteer chair of the then California ALS Research Network.
Since that time, as the volunteer chair of the group, he has helped to organize and plan the content, along with other members of the research community, for the annual California ALS Research Summit, presented by the ALS Network, formerly ALS Golden West. The focus of the Summit is to discuss latest advancements in ALS research and care, and to provide the opportunity to connect and collaborate with ALS researchers, investigators, clinicians, biotech companies, partner organizations, and advocates in ALS from across the state and beyond.
“If the researchers meet and understand those living with ALS, they are more motivated to help, and stimulate them to work as hard as they possibly can, towards a goal of understanding more about ALS and finding a cure.“
Clive Svendsen, PhD
A major component of the summit is the annual presentation of the Barber ALS Research Awards, created in memory of Jim Barber, who was was diagnosed with ALS in 2006, As an ALS advocate, a major outcome of Jim’s work was the formation of the California ALS Research Network in 2010 and the creation of the annual California ALS Research Summit in 2011. Jim worked closely with Dr. Svendsen as a founding member in the creation of the Network and the Summit. In addition, along with other advocates, they both helped secure a pivotal $18 million grant for ALS research from the California Institute for Regenerative Medicine (CIRM).
After Jim’s death in 2016, the Barber family decided to honor Jim’s deep passion for advancing scientific achievement by fostering early-career researchers and developing new ideas. To encourage this scientific collaboration and professional recognition, they created a scientific poster presentation as a part of the annual ALS Research Summit, which Dr. Svendsen has helped to oversee since its inception in 2017.
Dr. Svendsen was honored with the ALS Network’s Essey Committment to Cures Award in 2023, as a member of the ALS Research Network, for their extensive efforts and collaboration on ALS research, development, and education; and its dedication to bring treatments and cures to the ALS community. In addition, he has volunteered his time directly to the ALS community, in leading our annual ASK ME webinar, to share the highlights and outcomes of the Summit.
“It’s all about the patients, and we are constantly interacting with clinicians, talking to patients and finding out what about the disease we don’t understand. Patient interactions are very important, which is why the ALS Network is very important.”
Clive Svendsen, PhD
Currently, Dr. Svendsen serves as the chair of the ALS Network’s research program, our ALS research summit, and is a member of our new scientific advisory committee. His compassion and dedication to the ALS community is evident in how he speaks about the promise of scientific discovery.