The 13th Annual California ALS Research Summit Supports Progress and Collaboration

13th annual California ALS Research Summit was a seminal event in the world of ALS research and care, attracting over 200 researchers, investigators, clinicians, biotech companies, government representatives, partner organizations, and advocates in ALS from across the state and beyond. The Summit serves as an annual opportunity for experts in the field to come together to discuss the latest advancements in ALS research, share their findings, and collaborate towards finding a cure for the disease.

The two-day Summit was filled with presentations and discussions on a wide range of topics, from genetics to the development of new treatments. Nearly 40 special guest speakers conducted special lectures, panel discussions, and scientific presentations were given over the two day event. In addition to presenters from California, the summit had participants from throughout the US and from as far away as Japan! “We bring the voices of the ALS community to you,” said Sheri Strahl, Chief Operating Officer of the Golden West Chapter. “We have some emerging ideas on how we can bring underrepresented communities to research and research trials.” Keynote speakers included leading ALS researchers, who shared their latest findings on the genetic basis of the disease and the role of genetics in its progression.

The first day included a debate facilitated by Jeremy Shefner, MD, PhD, Barrow Neurological Institute covering the compelling topic, “Should drugs showing efficacy in a Phase II Trial for ALS be approved without a Phase III Trial?” “The FDA cares about two things,” said Jeffrey Rosenfeld, MD, Loma Linda University, who was agreeing with the above statement. “Are they safe and do they do what they are intended to do?” 

One of the highlights of the first day of the event was the presentation of new data from ongoing clinical trials led by Björn Oskarsson, MD, FAAN, Mayo Clinic, which are investigating potential treatments for ALS. These trials are aimed at finding new ways to slow the progression of the disease and improve quality of life for those affected by it. The results presented at the Summit showed promising progress towards these goals, with a number of experimental therapies showing promising results in early-stage clinical trials.

The discussions and presentations provided a comprehensive overview of the current state of the field, and gave attendees a glimpse into the future of ALS research. Whether you are a researcher in academia or industry, this summit was an invaluable opportunity to network with other experts in the field and stay informed on the latest advancements in ALS research.

Day two included industry updates facilitated by Lucie Bruijn, PhD, MBA, Therapeutic Area Lead of Novartis. “ALS is and will maintain a priority at Novartis,” Bruijn stated. Industry updates were also given by Peter Vanderklish, PhD, Head of Biology at Amydis, Toby Ferguson, MD, PhD, Vice President of Biogen and Robert H. Scannevin, PhD, Chief Scientific Officer at Verge.

This year’s Summit was a resounding success, and continues to provide a platform for the exchange of new ideas and findings among experts in the field of ALS research. With the knowledge and insights gained, we can continue to work towards finding treatments and cures for ALS and improving the lives of those affected by this devastating disease. The California ALS Research Network, who are an ad hoc group of ALS researchers, investigators, clinicians, and advocates, along with representatives of industry, government, and partner organizations, take part in organizing the Summit. This year at the Golden West Chapter’s Champions for Cures and Care event, the California ALS Research Network was awarded with the Chapter’s highest honors, the Essey Commitment to Cures award.

In 2017, the Network created the annual Barber ALS Research Awards in memory of one of its founding members, Jim Barber. It was Jim’s desire that the annual ALS Research Summit would encourage collaboration and sharing of ideas as well as give special recognition to those participating researchers. Continuing annually, the Barber family and Golden West Chapter have presented three cash awards of $1,000 to each of the top poster presenters, along with a special memento recognizing their accomplishment. The awards are presented to support early-career ALS researchers. This year’s honorees include Michael Edison Ramos of Cedars-Sinai Medical Center, Monica Feole of Cedars-Sinai Medical Center and Carolina Kondorfer Rangel of UCSD.

Highlights from this Summit are always presented to the public at our annual ASK ME webinar, sponsored by Mitsubishi Tanabe Pharma America. This event provides everyone with the opportunity to hear first-hand, via Zoom and live stream, an overview of what was discussed and presented during the Summit from top clinicians and researchers in the field.

Highlights of the 2023 Summit are presented by Clive Svendsen, PhD, Chair, California ALS Research Network, at our annual ASK ME webinar, “ALS Research and Care in 2023.” In addition, Catherine Lomen-Hoerth, MD, PhD, Clinic Director of ALS Treatment and Research Center at UCSF, gave a presentation about the Barber ALS Research Awards and increasing diversity, equity, and inclusion (DEI) in ALS research and care. Dr. Svendsen also provided an overview of Cedars-Sinai’s Phase 1 clinical trial examining the safety of transplanting genetically engineered stem cells into the motor cortex. Our deepest gratitude to Dr. Svendsen, Dr. Lomen-Hoerth, the California ALS Research Network, and all who took part in the Summit. It is only together that we will defeat ALS.