The ALS Association

Ice Bucket Challenge Progress

The California ALS Research Network holds its first summit in San Francisco to great success

By Jenica Lancy

June 16, 2010

California ALS Research Network held the first California ALS Research Summit June 27-28 in San Francisco. This two-day meeting included over fifty California leaders in ALS research, as well as representatives from the National Institute of Neurological Disorders and Stroke, the California Institute for Regenerative Medicine, and The ALS Association. The purpose was to share information in three main areas of ALS research (protein aggregation, stem cells and molecular therapies); create discussion about ALS research funding; and foster networking among scientists, clinicians, biotech companies and ALS advocates.

"This is an exciting time for ALS research with remarkable advances in technologies and scientists world-wide committed to find treatments and a cure for ALS, remarked Lucie Bruijn, Ph.D., Chief Scientist, The ALS Association. “Collaboration is key to success and the opportunity for all the scientists in California to gather at this meeting and work together is extremely exciting."

Martina Wiedau-Pazos, M.D., Co-Director, ALS Center, UCLA, and Summit Chairperson offered, “It is important to remember what brought all of us here. The challenge is to harness the collective energy and wisdom in this room.”  Fellow organizer and ALS Advocate, Jim Barber, who has ALS, noted that “ALS is not a partisan issue, but it is a budget issue. Historically, money and politics often are what drive research and the science follows. The premise of this summit is to have the science drive the research and have the money and politics follow.” Fellow ALS Advocate, Dean Rasmussen, added "We want this to be the conference that you want to go to every year. My thanks to everyone for their commitment to make this event happen."

Over the course of the two-day meeting, attendees participated in scientific presentations, plenary sessions and panel discussions. At the conclusion, the spirit among the attendees was one of promise and shared conviction.

"The day that I met my first ALS patient was the day that I knew I wanted to work on this disease," shared Clive Svendsen, Ph.D., Director, Cedars-Sinai RMI, in his presentation. Robert Miller, M.D., Director ALS Center, Forbes Norris, CPMC commented, "Just being here together -- scientists, clinicians, bio tech, government representatives, ALS advocates -- this, to me, represents a major step forward."

Jim Barber summarized the spirit of the people who are living with ALS and their loved ones: "You picked a tough disease to tackle. On behalf of very grateful ALS community: Thank you for that. You have our support – and carry our hopes – with you in all of your work."

California ALS Research Network is a group of experienced researchers, investigators and clinicians in ALS and related fields, as well as ALS patient advocates. The vision/mission of the Network is to find effective treatments and a cure 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 world-wide. From the information shared at the summit, the California ALS Research Network will create a white paper, which will provide a roadmap for ALS research in California. This will provide the basis for partnering with the state and other supporters to further ALS research. For more information, about the Network and their partnership with The Association, visit their website.

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