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

September 20, 2013- Honolulu, Hawaii

2013 Ask the experts- Hawaii
Participants at the 2013 "Ask the Experts" in Honolulu, Hawaii

The ALS Association Golden West Chapter held a special "Ask the Experts" event for the public featuring ALS experts who discussed important aspects of clinical care and promising developments in ALS research.  The program, entitled "Living with ALS", offered people with Lou Gehrig's Disease and their loved ones an opportunity to ask questions directly to clinicians. 

“There currently isn’t enough support in Hawaii for people living with ALS and their families,” said Fred Fisher, President and CEO of The ALS Association Golden West Chapter. “It takes nine different medical specialists who coordinate treatment plans, along with community-based social workers, to help people with ALS manage the unrelenting progression of the disease. We are excited for the opportunity to work with the team at Queen’s Medical Center as they continue to develop their multidisciplinary ALS clinic. While, at this time, there is no known cure for ALS, receiving the kind of excellent care that these specialty clinics can provide has been shown to lengthen and improve people’s quality of  life significantly.”

More than 30 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 and words of appreciation. In addition to the clinical and research presentations, there were special introductory remarks from Victoria “Nohea” Nakaahiki, who serves as an Advisory Trustee of the Golden West Chapter.

2013 Ask the experts- Hawaii- Fred Fisher
Golden West Chapter's President and CEO, Fred Fisher discussing
The ALS Association's vision ito create a world without ALS through
supporting care services, research, and public policy.

“This event has significant meaning to my family,” said Nohea, who chaired the Golden West Chapter’s inaugural Hawaii Walk to Defeat ALS. “When my husband, Clarence “Bully” Nakaahiki, was first diagnosed with ALS, we were living in California, and the Golden West Chapter helped us access the services and resources we needed. With the rapid progression of his disease, we decided to move back to Hawaii to be closer to our loved ones. We were shocked by the lack of resources here, and the challenges of living with ALS in Hawaii impacted our entire family.”

“We appreciate the opportunity to collaborate with The ALS Association Golden West Chapter to bring the ‘Ask the Experts’ event to Hawaii,” added Karen Seth, Director of the Queen’s Neuroscience Institute and Ancillary Services. “Many wonderful resources, information, ideas and expertise were shared in one venue for a very unique population. It was remarkable to have people with ALS, their families and caregivers present physically, while people from neighbor islands and the mainland were viewing the live webcast. It was quite an impactful experience.”

“The mission of the Queen's Medical Center is to provide quality health care services to improve the well-being of native Hawaiians and all the people of Hawaii," shared Dr. Douglas Miles, who leads the Neurosciences clinic at Queen’s Medical Center.  "In that spirit, we at the Queen's Neuroscience Institute are doing what we can to improve the well-being of Hawaii residents with ALS/motor neuron disease.  We are excited about the opportunity to partner in this endeavor with the Golden West Chapter.”

You can watch the recording of the presentations below and on our You Tube channel.


Event Program

1:30-2:00 pm
Aloha, E Komo Mai

Check-in, light refreshments,
vendor exhibits
2:00-2:05 pm 
Welcome and Introduction

Victoria "Nohea" Nakaahiki
Advisory Trustee
Chair, Hawaii Walk to Defeat ALS
The ALS Association Golden West Chapter
     
2:05-2:35 pm
Creating a World Without ALS through Research, Advocacy, and Patient Care

Fred Fisher, MSW, LCSW, President & CEO,
The ALS Association Golden West Chapter
2:35-3:05 pm
ALS Multidisciplinary Care

J. Douglas Miles, MD, PhD
Neuromuscular Specialist
The Queen’s Medical Center
     
3:05-3:35 pm
Communication with ALS

Katherine Krammer, MS, CCC-SLP, RN
Speech Language Pathologist
The Queen’s Medical Center
     
3:35-3:45 pm
Break
 
3:45-4:15 pm Meeting Your Mobility and Functional Needs

Julie Seman, PT
Wendy Tsutsui, OT
The Queen’s Medical Center
     
4:15-4:45 pm
Research Developments
 
     



Special Thanks to Our Event Sponsor

Queens Medical Center

2012 Ask the Experts-Footer