Ask the Experts-Living with ALS-2013 Hawaii

Important Aspects in Clinical Care and Promising Developments in ALS Research Discussed at Special "Ask the Experts" Event

January 31- San Francisco, California

Dr. Catherine Lomen-Hoerth from the
ALS Center at UCSF leads the clinical presentations
for the "Ask the Experts" in San Francisco

Following the 5th Annual California ALS Research Summit, The ALS Association Golden West Chapter held a special "Ask the Experts" event for the public featuring top ALS clinicians and scientists. The program's focus was on important aspects of clinical care and promising developments in ALS research, and offered an opportunity for attendees to ask questions directly of the presenters.

More than 85 people with ALS, their families and members of the community were in attendance. Many traveled long distances to be at the event in person, while others watched via a live webcast and chatted in their questions.

"The symposium was very enlightening, " said Matt Chaney who was been living with ALS since 2001. "It was great to hear about a lot of the new research being funded by The ALS Association and the progress being made. The light at the end of the tunnel is a little bit brighter, but still in the distance. I can only hope that the awareness raised last year by the Ice Bucket Challenge will continue to inspire donations to allow the research to continue at a faster pace and allow The ALS Association to fulfill its mission of ending this disease."

Clive Svendsen, PhD and Don Cleavland, PhD,
investigators of The ALS Association's Neuro Collaborative
start off the research portion of the "Ask the Experts" event.

“We appreciate the opportunity to collaborate with The ALS Association Golden West Chapter to bring this opportunity to the ALS community,” said Catherine Lomen-Hoerth, MD, PhD, Director of the ALS Center at UCSF. “There were many wonderful resources, information, ideas and expertise that were shared during the event. It was remarkable for people with ALS, their families and caregivers to be able to have the chance to ask questions directly, whether they were there in person or were viewing the live webcast. It was quite an impactful experience.”

"For next year's summit, we are planning 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," said Clive Svendsen PhD, Chair of the California ALS Research Network. "Together, we can make progress."

"I was delighted to be able to share some of the highlights of our research with people with ALS and their families, " siad Steve Finkbeiner, Associate Director, Gladstone Institutes. "It is so important that they understand that it will take a team to solve ALS and we need everyone to get involved in whatever capacity that they can."

You can watch the recording of the presentations below and on our You Tube channel. Please email any questions to asktheexperts@alsagoldenwest.org.

Catherine Lomen-Hoerth, MD, PhD Professor, University of California, San Francisco Director, The ALS Treatment and Research Center University of California, San Francisco A Certified Treatment Center of Excellence Multidisciplinary Care for ALS and ALS-FTD

Amy Roman, MS, CCC, SLP Director, AAC Loan Library, Golden West Chapter AAC Specialist, Forbes Norris ALS Center, CPMC A Certified Treatment Center of Excellence 7 Components of a Highly Effective Communication System Lee Guion MA, RRT, FAARC Neurorespiratory Clinical Specialist, Forbes Norris ALS Center, CPMC A Certified Treatment Center of Excellence 7 Best Ways to Maintain Lung Health in ALS Andrew Lui, PT, DPT Associate Professor, University of California, San Francisco Physical Therapist, The ALS Center at UCSF A Certified Treatment Center of Excellence An update on exercise for people with ALS:Why, when, and how? David Besio, MS, RD Clinical Dietitian, The ALS Center at UCSF and Forbes Norris ALS Center, CPMC A Certified Treatment Center of Excellence A+ Nutrition for ALS

Clive Svendsen, PhD Director, RMI, Cedars-Sinai Medical Center Chair, California ALS Research Network Investigator, Neuro Collaborative Research Initiative Updates from The California ALS Research Network Don W. Cleveland, PhD \Chair, Cellular and Molecular Medicine, UCSD Member, Ludwig Institute for Cancer Research Member, California ALS Research Network Investigator, Neuro Collaborative Research Initiative Presentation slides coming soon!

Steven Finkbeiner, MD, PhD Associate Director, Gladstone Institutes Member, California ALS Research Network Investigator, Neuro Collaborative Research Initiative An Update on Some of our ALS Research and Efforts to Find Therapies Lucie Bruijn, PhD, MBA Chief Scientist, The ALS Association Member, California ALS Research Network Presentation slides coming soon!