About the Summit

Participants from the 7th Annual California ALS Research Summit in Los Angeles- Photo by Jenica Lancy

The California ALS 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 to help increase, expedite and promote the amount and level of related research done in California; and to foster networking, collaboration and cooperation among investigators, their peers and their colleagues to identify, develop and deliver new and effective treatments, ideas and, ultimately, a cure.

Several factors have set the stage for this unique program:

  • The Prop. 71 ballot initiative establishing the California Institute for Regenerative Medicine (CIRM) and its $3 billion stem cell research fund has allowed ambitious stem cell projects for ALS to move ahead.
  • In 2008, the Governor signed into state law a bill sponsored by the 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.
  • In 2011, AB 234 (Fuentes) reestablished the Fund.  To date, California tax payers have contributed more than $550,000 which can be reinvested to fund California- based ALS research projects and clinical trials.
  • 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 in California to work together to increase ALS clinical trials in California.

The Network and Summit are products of the advocacy efforts of the four California Chapters of The ALS Association. For a full discussion of how the Network and Summit came about, please click here.

The California ALS Research Network has sponsored three annual California ALS Research Summits. The first year’s event focused on three areas of 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. To see highlights from the 2010 Summit, please view this article.

The second annual California ALS Research Summit built on the first year's success and focused on biomarkers and translational research – two key components of any effective overall ALS research effort. The California ALS Research Network continues to receive support from the California Legislature for their efforts to jumpstart ALS research in California.

At the third annual Summit, 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. Several of the Summit speakers conducted an "Ask the Experts" event open to the public, which focused on updates discussed during the Summit as well as provided an opportunity for attendees to ask questions directly of the scientists

The fourth annual Summit focused on the themes of stem cell advances, emerging trends and trials 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.

The fifth annual Summit followed the year of the ALS Ice Bucket Challenge and the Oscar Award-winning film about the life of the reknown Stephen Hawking.  We had leaders of biotechnology and pharmaceutical companies come and engage with both researchers and clinicians.   The discussions were stimulating and productive with a number of new ideas to focus on in the coming year.  These included integrating clinical data from ALS patients with the large amounts of genetics and other types of cellular data now being generated from many research groups around the world.  Through this “Big Data” analysis, it should be possible to start associating the symptoms of ALS with the biology of motor neurons that go awry. The group was clear that collaborations between industry, academia and medicine will lead to a better understanding of this devastating disease.   

The sixth annual summit 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, neuroinflamation, and stem cells. There was a special segment about the activities of the Neuro Collaborative, a California-based research initiative 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 the California Institute for Regenerative Medicine (CIRM) and Duane Morris, LLP.

The seventh annual summit featured special sections of neuroinflamation, clinical trials, and brain machine interfaces, Special guest speakers included representatives from the California Institute for Regenerative Medicine (CIRM) and Duane Morris, LLP. This year marked the inaugural presentation of the Jim Barber Research Award, dedicated to one of the founding members of the California ALS Research Network.

In 2018, we will move the summit to Palo Alto and look forward to pulling together another great meeting - and this time plan to have some activity based around patients actually mingling with the scientists and clinicians to brainstorm about new ways to treat and eventually cure ALS. Together we can make progress.


The 6th Annual California ALS Research Summit
at USC in Los Angeles

The 5th Annual California ALS Research Summit
at the Gladstone Institutes in San Francisco


 4th Annual California ALS Research Summit
at UCSF in Fresno
 3rd Annual California ALS Research Summit
at Cedars-Sinai in Los Angeles

 2nd Annual California ALS Research Summit in Los Angeles  1st Annual California ALS Research Summit in San Francisco