About the Summit

The ALS Network Research Summit is an annual gathering of researchers, investigators, clinicians, biotech companies, government representatives, partner organizations, and advocates in ALS and related fields. The purpose of the Summit is to help increase, expedite and promote the amount and level of related ALS research done in California and around the world; and to foster networking, collaboration, and cooperation among investigators, their peers, and their colleagues to identify, develop and deliver new and effective treatments and cures.  Several factors set the stage for the inception of this unique program:

In 2004, the Prop. 71 ballot initiative establishing the California Institute for Regenerative Medicine (CIRM) and its $3 billion stem cell research fund allowed ambitious stem cell projects for ALS to move ahead.  Since then, CIRM has served as a key funder of the Research Summit for several years, as well as host of annual Summit panels related to stem cell science.

In 2008, the Governor signed into state law a bill sponsored by the then four California Chapters of The ALS Association. SB 1502 (Steinberg) established the ALS/Lou Gehrig’s Disease Research Fund as part of the California Tax Check-off Program.

A clinical research consortium, the Pacific ALS Consortium (PAC-10) was formed in the Fall of 2009 by the 10 major ALS clinical research sites to work together to increase ALS clinical trials in California.

In 2011, AB 234 (Fuentes) reestablished the Fund. To date, California taxpayers have contributed more than $550,000 which can be reinvested to fund California-based ALS research projects and clinical trials.

More recent public policy wins in California will serve to enhance the work of the ALS Network, its Scientific Advisory Committee, and Summit participants for years to come. Our successes include:

• Established the ALS/Neurodegenerative Disease Registry in California, which establishes a statewide ALS registry and will direct the California Department of Public Health to collect data on ALS and require hospitals and healthcare professionals to report each case of ALS

• Passage of the California ALS Research Network Tax Contribution Fund. California taxpayers can now support ALS and related neurodegenerative disease research via voluntary tax return contributions, using Code 447. Note: we must raise $250,000 each year to benefit from this tax check-off program.

The following is a short chronological history of the Summit starting with:

The inaugural Summit (formerly named the California ALS Research Summit) was held on June 27- 28, 2010 at the then Hotel Miyako in San Francisco. The focus of the meeting was on three areas of ALS research: stem cells, proteins, and molecular therapies. As promised, the event resulted in the creation of a white paper. This important collaboration was published in both a lay version, which was submitted to members of the California Legislature in March 2011, and a scientific version which was published by the journal, Future Medicine, in July 2011. The ALS Research Network continued to receive support from the California Legislature for its efforts to jumpstart ALS research in California.

Building on the first year's success, the second annual Summit was held on September 30 - October 1, 2011, at UCLA  and focused on biomarkers and translational research – two key components of any effective overall ALS research effort. In addition, the Golden Chapter created a video series entitled, “Views from the Summit,” featuring in-depth interviews with Summit speakers and participants about their ALS research efforts. The Golden West Chapter also launched its Ask the Experts educational series, which was open to the public and also live-streamed. The event focused on updates discussed during the Summit as well as provide an opportunity for attendees to ask questions directly to the scientists

The third annual Summit was held November 16-17, 2012 at Cedars-Sinai. in addition to updates on research collaborations and clinical trials, there was an extensive discussion on how to move ALS research forward in California and on developing a business plan for the Network. Following the Summit, the Golden West Chapter held its "Ask the Experts'' with ALS experts discussing important aspects of clinical care and promising developments in ALS research.

The fourth annual Summit was held January 10-11 at UCSF Fresno. The meeting was focused on stem cell advances, as well as emerging trends and trials of ASO therapy for motor neuron diseases. There was also a focus on RNA binding proteins with TDP 43 and with processing defects and the relevance of C9orf72. The event concluded with a rousing rapid-fire poster presentation featuring the work of more than 12 early career researchers. There was also an Ask the Experts educational event following the Summit, featuring current research and treatment advances.

The fifth annual Summit followed the year of unprecedented ALS awareness and support, thanks to the ALS Ice Bucket Challenge and the Oscar Award-winning film about the life of the renowned Dr. Stephen Hawking. The meeting was held January 30-31, 2015 at Gladstone Institutes. An overview of topics includes robust presentations around “Big Data'' analysis, which showed that it could be possible to start associating the symptoms of ALS with the biology of motor neurons that go awry. In addition, leaders from biotechnology and pharmaceutical companies attended the Summit and engaged with both researchers and clinicians. It was clear that ongoing collaborations between industry, academia, and medicine would lead to a better understanding of ALS. The post-summit Ask the Experts educational event featured members of the Summit as well as presenters from both Forbes Norris and UCSF Certified Treatment Centers of Excellence.

In 2016, the sixth annual Summit was held at UCSD and the meeting was expanded to three days - January 7, 8, and 9 - and featured updates on genetics, industry, and emerging trends and trials. There was a special discussion about current research in biomarkers, motor neuron survival and function, neuroinflammation, and stem cells. There was a special segment about the activities of the Neuro Collaborative, a California-based research initiative that received initial funding from the ALS Ice Bucket Challenge. There was also robust discussion about prospects for new drug development in ALS as well as expanding drug targets and delivery techniques. Special guest speakers included representatives from CIRM and Duane Morris, LLP.

The seventh annual Summit was held at USC on January 13, 14, and 15, 2017. The meeting featured special sections on neuroinflammation, clinical trials, and brain-machine interfaces. Special guest speakers included representatives from the CIRM and Duane Morris, LLP. This year marked the inaugural presentation of the Barber ALS Research Award, dedicated to one of the founders of the California ALS Research Network. The Golden West Chapter’s Ask the Experts public education event continued the tradition of sharing outcomes from the Summit with the ALS community.

The eighth annual Summit was held on January 18, 19, and 20, 2018 at Stanford University. We welcomed as our keynote speakers, Karl Deisseroth, MD, PhD, Stanford University, and Cori Bargmann from the Chan Zuckerberg Institute. The second day of the summit featured the second presentation of the Barber ALS Research Award. Following the Summit, the Golden West Chapter’s Ask the Experts event featured special presentations about ALS care from staff from the ALS Clinic at Stanford as well as updates on promising developments in ALS research from members of the ALS Research Network.

In 2019, the ninth annual Summit was held on January 11- 12 at UC Irvine. We were excited to host Brian Kaspar, PhD, from AveXis who presented our keynote topic about gene therapy for neurological diseases. We also welcomed attendees from the annual World Association of Lesson Studies (WALS) meeting and presented the Barber ALS Research Award for the 3rd year. The Golden West Chapter collaborated with the Orange County Chapter in the production of the annual Ask the Experts educational event.

For the tenth annual Summit, we returned to Cedars-Sinai on January 24- 25, 2020, and had another great meeting. Highlights included celebrating several members of our network who were honored internationally for their efforts. We also welcomed attendees from the annual WALS meeting and presented the Barber ALS Research Award for the 4th year. For the first time, our Ask the Experts educational symposium featured a mock poster presentation for Barber ALS Award winners, which was facilitated by Dr. Jeffery Rosenfeld, Loma Linda University and noted ALS advocate, Dallas Forshew, RN.

In 2021, due to the COVID-19 pandemic, the eleventh annual Summit returned to Gladstone Institutes, albeit virtually, on January 21 - 22. Many new participants were able to join and participate online from around the world. We were proud to host keynote speaker, Jennifer Doudna PhD, 2021 Nobel Prize winner in Chemistry, along with collaborator Emmanuelle Charpentier, PhD. General topics for the summit sessions included genetics, stem cells, clinical trials, digital technologies, gene therapies, biomarkers, big data, and updates from industry. It was also the 5th year of the Barber ALS Research Award. Our post-summit public event also moved online, as our new “ASK ME” webinar series.

In the second year of the COVID- 19 pandemic, the twelfth annual Summit remained in a virtual setting. The meeting was hosted by Cedar-Sinai and was held January 27 -28, 2022 with many new participants able to join us online. Highlights included unique presentations about controlling speech with brain-machine interfaces with Dr. Eddie Chang of UCSF and Guamanian ALS/Parkinson's Disease/Dementia Complex with Dr. Paul Cox. In addition, there were many special presentations from researchers outside of California, including Massachusetts General Hospital, the University of Florida, and the NIH. Following the summit, ALS Golden West hosted an ASK ME educational webinar which included an overview of the outcomes of the Summit and was their highest-attended online event for the year.

In 2023, the thirteenth annual California ALS Research Summit returned to an in-person-only structure and was held on January 20 - 21 in Burlingame, the heart of California's biotech community. Our plenary speaker was Merit Cudkowicz, MD, MSc, Massachusetts General Hospital, who gave a robust update on the Healey Platform Trial,  and also discussed other innovative trials and approaches. ALS Golden West continued its commitment of sharing an overview of outcomes of the Summit to the public through their ASK ME educational webinar, which continued to be their highest-attended online event for the year.

In 2024, the fourteenth annual California ALS Research Summit returned to Los Angeles with another in-person-only agenda on January 19 - 20. Nearly 200 registered summit attendees including researchers, investigators, clinicians, biotech companies, industry, government representatives, partner organizations, and advocates in ALS and related fields in the State of California. Nearly 40 special guest speakers conducted special lectures, panel discussions, and scientific presentations given over two days. In addition to presenters from California, the summit had participants from throughout the US. 

Sessions on the first day included discussions on vehicles and targets for delivering therapies across the blood-brain barrier; antisense oligonucleotides (ASOs) for ALS; important updates from industry and clinical trials as well as from the Western ALS Consortium (WALS); and CIRM-Funded ALS Research and Clinical Trials in California. The second day included hot topics such as TDP - 43 and cryptic exons, and Synaptopathy in ALS. There were also discussions about protein misfolding and TDP-43 biology in ALS; and innovations, modeling, and AI in ALS research

Of note, the 7th annual Barber ALS Research Awards had the largest number of poster presentations in its history. The Summit closed with a robust discussion about looking forward and expanding the impact of the ALS research collaboration as a part of the ALS Golden West’s separation from the ALS Association and rebranding as ALS Network. 

In 2025, we look forward to our fifteenth annual meeting, renamed as the ALS Network Research Summit and planned by the ALS Network Scientific Advisory Committee. Together we are making progress in the search for prevention strategies, effective treatments, and cures for ALS.