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The 5th Annual California ALS Research Summit Supports
Ongoing Collaboration and New Ideas in the Fight against ALS

January 31, 2014 - San Francisco, California

California ALS Research Summit -Welcome
Attendees of the 5th Annual California ALS Research
Summit took part in a marathon two-day meeting with
over 40 presenations and panel discussions.
California ALS Research Summit 2

The Golden West Chapter and the California ALS Research Network co-sponsored the 5th Annual California ALS Research Summit. This two-day event was held in San Francisco at the Gladstone Institutes, a key site of the Neuro Collaborative Research Initiative which received funding from Ice Bucket Challenge donations. The ongoing purpose of the Summit is to create discussion about ALS, research and funding as well as fostering networking among scientists, clinicians, biotech companies and ALS advocates. This two-day meeting included more than 75 world leaders in ALS research and clinical care, representatives from biotech companies, and members of The ALS Association.

"This is a particularly exciting time for ALS research with increased funds committed towards the development of treatments for ALS," Lucie Brujin, Chief Scientist of The ALS Association.

“This year, because of the Ice Bucket Challenge and the many films about people with ALS, we saw some of the leaders of industry come to the summit and engage with both researchers and clinicians." said Clive Svendsen, PhD, Chair, California ALS Research Network and Director, Cedars-Sinai RMI. "The discussions were stimulating and productive, with a number of new ideas to focus on 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. Collaborations between industry, academia and medicine will lead to a better understanding of this devastating disease."

Steve Finkbeiner, Associate Director and Senior Investigator of The Gladstone Institutes agreed that the onset of the Ice Bucket Challenge brought a new public interest towards finding a cure for ALS.

"Every one of us feels a sense of urgency around the need to develop therapeutics for ALS and that has only increased with the success of the Ice Bucket Challenge, " said Finkbeiner. "This year, we reached out to biotechnology and pharmaceutical companies in a greater way than ever before. They have the expertise and resources to take the discoveries we make in the laboratory and to turn them into drugs to help patients. I was very pleased with their participation and the genuine sense of collegiality and collaboration they expressed in combatting ALS. I suspect that this will be an important feature for future summits, and I was delighted to be able to highlight these interactions with patients and their families during the “Ask the Experts” session. Its so important that patients and families understand that it will take a team to solve ALS and we need everyone to get involved in whatever capacity that they can."

Renee Zellwegger with Phil and Kay ThomasAcademy Award-winning Actress/LA Walk Team Captain
Renee Zellweger with Golden West Chapter
Board Chair Phil Thomas and his wife Kay.
Top honors for 32014 LA Walk and Napa Valley Ride Team CaptaGolden West Chapter President and CEO, Fred Fisher with
LA Walk Team Captain Renee Zellweger and Nanci Ryder
of "THE NBAA: Team Nanci", along with Napa Valley Ride
Team Captain Sarah Coglianese and her husband,
Rob Goulding, from Team "Speed for Sarah".

Special guest speakers included Jonah Chan PhD, Associate Professor from  UCSF, Department of Neurology who delivered a special keynote address about his current research efforts with new technologies to rapidly identify compounds that stimulate the regrowth of the myelin nerve casing, which is damaged in diseases like multiple sclerosis. In addition, Fred Noteware, veteran California lobbyist, spoke of the proposed “Right to Try” bill which would give people with terminal illnesses the right to use a drug that has gone through the first stage of FDA approval, provided they had the consent of their doctor and the pharmaceutical manufacturer. So far, four states - Michigan, Colorado, Missouri and Louisiana- have passed "Right to Try" bills. This year, California, along with 22 other states are considering the same. The subsequent panel discussion touched upon similar themes of obstacles to presenting trials to the public as well as efficacy of results when test subjects are very far along in the stages of a disease or are prompted to self medicate with unproven treatments. The consortium also discussed the different processes of working with pharmaceutical companies to fund trials and make their medications available to the public. 

There was an evening reception where special guests came to show their support for the efforts of these outstanding clinicians and researchers. After watching a video of the chapter highlights from 2014, there was a surprise award presentation for the team captains of two top teams from the Los Angeles Walk and Napa Valley Ride to Defeat ALS who were in attendance. Nanci Ryder, former star-publicist and honoree of "THE NBAA: Team Nanci " and Team Captain and Academy Award-winning actress, Renée Zellweger, accepted the award for the highest fundraising team in the LA Walk. The power duo each got an award for being top individual fundraisers for the Walk. In addition, Napa Valley Ride Team Captain Sarah Coglianese and her husband Rob Goulding accepted the Top Fundraising Team award for both of the 2013 and 2014 Rides on behalf of their team, "Speed4Sarah".

Attendees of the 5th Annual California ALS Research Summit took part in a marathon two-day meeting with over 40 presenations and panel discussions. The overwhleming feedback from the event was positive and hopeful.

"Next year we move the summit to San Diego and look forward to pulling together another great meeting," said Svendsen.  "We are plannning to have some activities, 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.”

5th Annual California Research Summit
Members of the California ALS Research Network, along with participants at the 2015 California ALS Research Summit

The 5th Annual California ALS Research Summit Supports
Ongoing Collaboration and New Ideas in the Fight against ALS

January 31, 2014 - San Francisco, California

California ALS Research Summit -Welcome
Attendees of the 5th Annual California ALS Research
Summit took part in a marathon two-day meeting with
over 40 presenations and panel discussions.
California ALS Research Summit 2

The Golden West Chapter and the California ALS Research Network co-sponsored the 5th Annual California ALS Research Summit. This two-day event was held in San Francisco at the Gladstone Institutes, a key site of the Neuro Collaborative Research Initiative which received funding from Ice Bucket Challenge donations. The ongoing purpose of the Summit is to create discussion about ALS, research and funding as well as fostering networking among scientists, clinicians, biotech companies and ALS advocates. This two-day meeting included more than 75 world leaders in ALS research and clinical care, representatives from biotech companies, and members of The ALS Association.

"This is a particularly exciting time for ALS research with increased funds committed towards the development of treatments for ALS," Lucie Brujin, Chief Scientist of The ALS Association.

“This year, because of the Ice Bucket Challenge and the many films about people with ALS, we saw some of the leaders of industry come to the summit and engage with both researchers and clinicians." said Clive Svendsen, PhD, Chair, California ALS Research Network and Director, Cedars-Sinai RMI. "The discussions were stimulating and productive, with a number of new ideas to focus on 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. Collaborations between industry, academia and medicine will lead to a better understanding of this devastating disease."

Steve Finkbeiner, Associate Director and Senior Investigator of The Gladstone Institutes agreed that the onset of the Ice Bucket Challenge brought a new public interest towards finding a cure for ALS.

"Every one of us feels a sense of urgency around the need to develop therapeutics for ALS and that has only increased with the success of the Ice Bucket Challenge, " said Finkbeiner. "This year, we reached out to biotechnology and pharmaceutical companies in a greater way than ever before. They have the expertise and resources to take the discoveries we make in the laboratory and to turn them into drugs to help patients. I was very pleased with their participation and the genuine sense of collegiality and collaboration they expressed in combatting ALS. I suspect that this will be an important feature for future summits, and I was delighted to be able to highlight these interactions with patients and their families during the “Ask the Experts” session. Its so important that patients and families understand that it will take a team to solve ALS and we need everyone to get involved in whatever capacity that they can."

Renee Zellwegger with Phil and Kay ThomasAcademy Award-winning Actress/LA Walk Team Captain
Renee Zellweger with Golden West Chapter
Board Chair Phil Thomas and his wife Kay.
Top honors for 32014 LA Walk and Napa Valley Ride Team CaptaGolden West Chapter President and CEO, Fred Fisher with
LA Walk Team Captain Renee Zellweger and Nanci Ryder
of "THE NBAA: Team Nanci", along with Napa Valley Ride
Team Captain Sarah Coglianese and her husband,
Rob Goulding, from Team "Speed for Sarah".

Special guest speakers included Jonah Chan PhD, Associate Professor from  UCSF, Department of Neurology who delivered a special keynote address about his current research efforts with new technologies to rapidly identify compounds that stimulate the regrowth of the myelin nerve casing, which is damaged in diseases like multiple sclerosis. In addition, Fred Noteware, veteran California lobbyist, spoke of the proposed “Right to Try” bill which would give people with terminal illnesses the right to use a drug that has gone through the first stage of FDA approval, provided they had the consent of their doctor and the pharmaceutical manufacturer. So far, four states - Michigan, Colorado, Missouri and Louisiana- have passed "Right to Try" bills. This year, California, along with 22 other states are considering the same. The subsequent panel discussion touched upon similar themes of obstacles to presenting trials to the public as well as efficacy of results when test subjects are very far along in the stages of a disease or are prompted to self medicate with unproven treatments. The consortium also discussed the different processes of working with pharmaceutical companies to fund trials and make their medications available to the public. 

There was an evening reception where special guests came to show their support for the efforts of these outstanding clinicians and researchers. After watching a video of the chapter highlights from 2014, there was a surprise award presentation for the team captains of two top teams from the Los Angeles Walk and Napa Valley Ride to Defeat ALS who were in attendance. Nanci Ryder, former star-publicist and honoree of "THE NBAA: Team Nanci " and Team Captain and Academy Award-winning actress, Renée Zellweger, accepted the award for the highest fundraising team in the LA Walk. The power duo each got an award for being top individual fundraisers for the Walk. In addition, Napa Valley Ride Team Captain Sarah Coglianese and her husband Rob Goulding accepted the Top Fundraising Team award for both of the 2013 and 2014 Rides on behalf of their team, "Speed4Sarah".

Attendees of the 5th Annual California ALS Research Summit took part in a marathon two-day meeting with over 40 presenations and panel discussions. The overwhleming feedback from the event was positive and hopeful.

"Next year we move the summit to San Diego and look forward to pulling together another great meeting," said Svendsen.  "We are plannning to have some activities, 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.”

5th Annual California Research Summit
Members of the California ALS Research Network, along with participants at the 2015 California ALS Research Summit