"The Path to the Summit: How we got to this point"
The California ALS Research Summit is an annual gathering of researchers, investigators, clinicians, biotech companies, government representatives and patient advocates in ALS and related fields: (i) to help increase, expedite and promote the amount and level of ALS and related research done in California; and (ii) to foster networking, collaboration and cooperation among themselves, their peers and their colleagues to identify, develop and deliver new and effective treatments, therapies, ideas and, ultimately, a cure for ALS.
The ALS Association is a member of the Coalition of Disease and Patient Organizations that supported the passage of Prop. 71, the ballot initiative establishing the California Institute for Regenerative Medicine and its $3 billion stem cell research fund. The success of that effort created an opportunity to engage and educate the California State Legislature about the need for more ALS-specific research, as well as the need for a more robust system of care for ALS patients. A committee consisting of members of the five California Chapters of The ALS Association, was formed to pursue this opportunity. An extensive search for a lobbyist who could help tell our story and promote the need for more legislation led to the retention of Noteware Government Relations. In turn, NGR introduced us to Sen. Steinberg, now President pro Tem of the California State Senate, who (a) is the ALS champion in the California Legislature, (b) sponsored two ALS bills written by The ALS Association’s CAAC which passed in 2008 and (c) has asked to be kept apprised of our group's activities and accomplishments.
Following the success of these two unprecedented pieces of legislation, the group set about the task of making the case for increased state funding to support ALS research and patient care. As part of this process, in April 2009 we were requested by Sen. Steinberg's office to provide more detailed information in support of our goals. 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). They were tasked with gathering input from a broad spectrum of ALS advocates, researchers and patient care providers to insure that the information and priorities we were advancing included input and participation from the broader ALS community. Each of these committees would develop "white papers" to further inform the California Legislature in the areas of ALS research and patient care and treatment, including a roadmap for doing novel and high impact ALS research in California. These reports will provide the basis for partnering with the state to further support ALS research in California. In addition, under the leadership of Dr. Robert Miller, director of the Forbes Norris ALS Center at the California Pacific Medical Center (an ALS Association Certified Center of Excellence in ALS care), the Pacific ALS Consortium was formed. It's members are the 10 major ALS clinical research sites in California and is poised to work together to perform cutting edge ALS clinical trials in California.
The next step was the creation of the first annual California ALS Research Summit- an intensive two-day workshop to develop the roadmap and strategic plan for jump-starting ALS research in California in 2010. This meeting included international leaders in three areas of ALS research: stem cells; protein aggregation; molecular therapies (to include gene therapy, antisense oligonucleotides, anti-inflammatory compounds, and other neuroprotective agents), as well as from NINDS and CIRM about ALS research funding and other topics. The summit was supported by a generous gift from the Chevron Corporation and substantial gifts from the other sponsors.
Since that time, The ALS Association has continued to exercise its leadership to focus attention and resources in these crucial areas through the annual summit meetings in California as well as through educational symposiums with experts in clinical care and research for the ALS community.