The Golden West Chapter will honor the members of the California ALS Research Network with the Essey Commitment to Cures Award at their Champions for Cures and Care celebration on Friday, January 20, 2023 at the Hyatt Regency San Francisco Airport in Burlingame. This inspirational and informative event celebrates individuals and organizations whose contributions and efforts advance the Chapter’s mission critical activities.
Named after one of the Chapter’s founding board members, San Francisco’s Richard “Dick” Essey, these prestigious awards are given annually for outstanding efforts in support of mission priorities in ALS research, care services, and advocacy initiatives.The Golden West Chapter will recognize The California 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.
Formed in 2010, this ad hoc group of researchers, investigators, clinicians, biotech companies, government representatives, partner organizations, and advocates in ALS has worked together to advance the search for effective treatments and cures for ALS; to facilitate development and implementation of the best possible ALS research program in California; and to put California in the forefront of ALS research worldwide. Several factors set the stage for this unique program:
- In 2004, the Prop. 71 ballot initiative established 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.
- In 2008, the Governor signed two bills into state law sponsored by the four California Chapters of The ALS Association. The first was SB 1502 (Steinberg), which established the ALS/Lou Gehrig’s Disease Research Fund as part of the California Tax Check-off Program, and raised nearly $700,000 for ALS research.
- The second was SB 1503 (Steinberg), the standard of care bill, which acknowledged The ALS Association’s Certified Treatment Centers of Excellence as the gold standard for ALS care and treatment and gave these Centers the designation of a specialty care center in the Health and Safety Code. This would prove instrumental in the Golden West Chapter’s efforts to eventually secure state funding.
- 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.
In April 2009, Senator Steinberg’s office requested more detailed information in support of making the case for increased state funding to support ALS research and patient care. This inquiry led to the formation of two ad hoc committees, one to address a standard of care for ALS patients (the California ALS Care and Treatment Committee) and another to address ALS research (the California ALS Research Network). The committees were tasked with gathering input from a broad spectrum of ALS advocates, researchers and patient care providers to ensure that the information and priorities that were advancing included input and participation from the broader ALS community and to further inform the California Legislature and provide the basis for partnering with the state for further support.
“Every single person on this team has a unique contribution to make,” said Jim Barber, Advisory Trustee and CoChair of the Golden West Chapter’s Advocacy Committee in 2010, who helped in drafting the bills which led to the creation of the Research Network. “Part of the idea of the research (committee) is to have the (seminar) and then produce a white paper to take back to the legislature.”
The inaugural California ALS Research Summit was held on June 27- 28, 2010 in San Francisco, with a focus on three areas of ALS research: stem cells, proteins, and molecular therapies. This important collaboration led to the publication of 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. Inspired by the success of this first gathering, the Golden West Chapter has continued their efforts to advance this momentum through collaboration.
“What we found that came out of the first summit was it was really the first opportunity to gather these researchers together in the same room and what comes out of that is new ideas, new questions, new ways of thinking,” shared Fred Fisher, President & CEO of the Golden West Chapter during an interview in 2012.
“It’s exciting for us as the ALS community to actually watch them exchange their ideas – they’re asking themselves questions that have never been asked before and that leads to new discoveries.” We have more scientifically-valid projects for ALS research sitting on a shelf than ever before.The only way we can get them off the shelf and into treatments and cures is to create the funding for it. That’s where the ALS community comes in … they are driving progress.”’
Led by Clive Svendsen, PhD, these esteemed individuals volunteer their time to help organize the annual California ALS Research Summit, along with the Golden West Chapter. The purpose of the Summit is to help increase, expedite and promote the amount and level of ALS and 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, cures for ALS. The result is an ongoing roadmap for ALS research in California, which will provide the basis for partnering within the state and other supporters to further studies to find effective treatments and cures for the disease.
“Each year, we engage with the leaders of industry and biotech, to come and present along with researchers and clinicians,” said Clive Svendsen, PhD, Chair, California ALS Research Network and Director, Cedars-Sinai RMI. “The discussions are always stimulating and productive, with a number of new ideas to focus on.”
“I think you can see a lot of exciting ideas develop into human trials, and a lot of us are very excited about the possibility of really changing the outcome for patients,” shared Richard Smith MD, Director, Center for Neurologic Study, in an interview in 2012. “We know so much more about the disease, almost every week or every month now we have breakthroughs. There are new genes being discovered, each one of these provides your insight into how you might actually treat the disease. We’re getting a much better idea about the disease and mechanisms of disease. As a scientist, I am excited that these resources are becoming available, and then things move a lot faster.”
Robert Miller, MD, Neurologist and former clinic director from the Forbes Norris ALS Treatment and Research Center at California Pacific Medical Center agreed and said, “Collaboration between industry, academia, and medicine will lead to a better understanding of this devastating disease.”
“I have been fortunate to have attended the research summit since its origin, and enjoyed helping host the summit in 2014,” said Jeffrey Rosenberg, MD. Clinic Director at Loma Linda University. “It has been an excellent forum to interact and collaborate with other scientists and clinicians, and has provided me the foundation for my current collaborations, which might not have been possible otherwise. I have also enjoyed presenting outcomes from the summit to the ALS community at the Golden West Chapter’s educational events.”
“There’s no substitute for putting people in the same room to discuss things,” said Steven Finkbeiner, MD, PhD, UCSF in an interview in 2012. “One of the fundamental challenges in doing translational research and actually making a difference for patients is that it involves people who are all of very different expertise. A lot of times the language that people use to communicate those ideas are very different. So getting people face-to-face through a meeting is a more effective way to transfer information from one to the other and back-and-forth.”
“The other is that as people get to know each other and get excited about things. So collaborations can emerge that might not have occurred to people, but they really come out through a dialogue.”
Finkbeiner, who has helped in hosting the Summit twice in 2015 and 2021, also added, “I think it’s very hard to do that in your office reading a paper by yourself. Sometimes it’s a conversation with several people at once, and it’s that time when you need to actually have three or four experts in the room. You really look at everyone, see their excitement and that they are now recharged with new ideas. Maybe some have an opportunity to refocus so that they’re more productive. I think it’s great.”
“We get to hear from scientists who may not be primarily studying ALS, and learn more about what they are doing,” said Justin Ichida, PhD, Assistant Professor of Stem Cell & Regenerative Medicine, at USC. “There is a lot of opportunity to learn more by looking at massive data sets for common trends in groups of people with different neurodegenerative diseases, including ALS.”
“Every one of us feels a sense of urgency to develop therapeutics for ALS and that has only increased,” said Aaron Gitler, PhD, Professor of Genetics, at Stanford University, who became a part of the network after helping to host the summit in 2018.
“It really is one of the most exciting times in ALS research,” said Don W. Cleveland, PhD, UCSD, who helped with hosting the Summit in San Diego in 2016. “I appreciate the opportunity to participate with my colleagues every year, both in the planning of the summit and in execution of the event.”
Supporters of the ALS community are invited to enjoy an elegant and festive evening featuring cocktails and wine tasting; a silent and live auction; gourmet dinner; special guest appearances; entertainment; and the presentation of the Golden West Chapter’s highest honors, The Essey Awards. In addition, the 2023 Barber ALS Research Award winners will be presented as a part of the Champions celebration. the annual Barber ALS Research Awards, which were created in honor of Jim Barber as one of the founding members of the Network and are presented each year to encourage collaboration and the sharing of new ideas with early-career researchers as well as give special recognition.
Proceeds from Champions for Cures and Care will provide funding for the Golden West Chapter’s mission priorities in care services, public policy, and cutting-edge global research toward effective treatments and cures for ALS. Sponsorship and ticket purchase opportunities are now available. Please contact Asher Garfinkel, Vice President of Community Outreach, at firstname.lastname@example.org for more information. Interested in donating an item to be included in the silent or live auction, or if you are attending the event and wish to stay at the host hotel Hyatt Regency San Francisco Airport, please email Katey Randall, Special Events Coordinator, at email@example.com.