ALS Ice Bucket Challenge Progress
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Working Together for Hawaii's ALS Community
Thanks to the efforts of many dedicated supporters and caring volunteers, the inaugural 2013 Hawaii Walk to Defeat ALS® was an incredible success. Soon after, in October 2013, The ALS Association Golden West Chapter welcomed the Aloha state into our service area and, in February 2014, began providing assistance and support in Hawaii to people with ALS and their families. This year, the Golden West Chapter has implemented important initiatives bringing greater awareness, new services and much-needed resources to the Hawaiian ALS community. In addition, the chapter will continue to collaborate with service organizations, medical centers, and other physician groups to establish multidisciplinary ALS clinical care throughout the Hawaiian Islands. Below are just a few of the milestones and outcomes achieved to date: January 2014 Three dedicated and talented members of the Hawaiian ALS community- Jan Medusky, Victorialei ‘Nohea’ Nakaahiki, and Cheryl Williams- joined the Chapter’s Board leadership. February 2014 Terryn Davis, OTR, joined the Golden West Chapter Care Services staff. She is now providing expert support, resources and information to Hawaiians living with ALS on Oahu, Kaua’i, Maui, Hawaii and Molokai. Terryn can be reached at: tdavis@alsagoldenwest.org or (808)-597-6416. The Golden West Chapter spearheaded the
creation of the Hawaii ALS
Consortium, a group of organizations and service providers
that support the ALS community in Hawaii.
The first
meeting was attended by representatives
from the Golden West Chapter, The Queen’s
Medical Center, the Veterans
Administration, ALS Ohana
of Hawaii, MDA, Bayada Home Health Care and medical professionals. As a
result of the success of this first meeting, the Hawaii ALS Consortium will
continue to meet quarterly to advance collaborative efforts, identify gaps in
services and discuss ways to work together to improve access to care and
support for the Hawaiian ALS community. March 2014 April 2014 Representatives from the chapter met with many families facing ALS, healthcare providers, local and state elected officials. The Golden West Chapter was publicly recognized by the Speaker of the House of Representatives during their full session, and testimony was submitted by over a dozen members of the Hawaiian ALS community at a House “Committee on Health” meeting in support of HR 68, Proposed HD 1. This legislation requests the auditor to assess the social and financial effects of requiring health insurers to provide coverage for brain injury. The bill is now making its way through the House of Representatives. As a result of our collective effort, this is the first time in Hawaii state history that the State legislature is formally recognizing the needs of the Hawaiian ALS community. May 2014 Members of the Hawaiian ALS community will join other ALS Advocates in Washington D.C. at the National ALS Advocacy Day and Public Policy Conference. The Golden West Chapter has also launched a state advocacy and public policy program to promote local and state-wide initiatives benefitting the Hawaiian ALS community. Upcoming Events:
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Working Together for Hawaii's ALS Community
Thanks to the efforts of many dedicated supporters and caring volunteers, the inaugural 2013 Hawaii Walk to Defeat ALS® was an incredible success. Soon after, in October 2013, The ALS Association Golden West Chapter welcomed the Aloha state into our service area and, in February 2014, began providing assistance and support in Hawaii to people with ALS and their families. This year, the Golden West Chapter has implemented important initiatives bringing greater awareness, new services and much-needed resources to the Hawaiian ALS community. In addition, the chapter will continue to collaborate with service organizations, medical centers, and other physician groups to establish multidisciplinary ALS clinical care throughout the Hawaiian Islands. Below are just a few of the milestones and outcomes achieved to date: January 2014 Three dedicated and talented members of the Hawaiian ALS community- Jan Medusky, Victorialei ‘Nohea’ Nakaahiki, and Cheryl Williams- joined the Chapter’s Board leadership. February 2014 Terryn Davis, OTR, joined the Golden West Chapter Care Services staff. She is now providing expert support, resources and information to Hawaiians living with ALS on Oahu, Kaua’i, Maui, Hawaii and Molokai. Terryn can be reached at: tdavis@alsagoldenwest.org or (808)-597-6416. The Golden West Chapter spearheaded the
creation of the Hawaii ALS
Consortium, a group of organizations and service providers
that support the ALS community in Hawaii.
The first
meeting was attended by representatives
from the Golden West Chapter, The Queen’s
Medical Center, the Veterans
Administration, ALS Ohana
of Hawaii, MDA, Bayada Home Health Care and medical professionals. As a
result of the success of this first meeting, the Hawaii ALS Consortium will
continue to meet quarterly to advance collaborative efforts, identify gaps in
services and discuss ways to work together to improve access to care and
support for the Hawaiian ALS community. March 2014 April 2014 Representatives from the chapter met with many families facing ALS, healthcare providers, local and state elected officials. The Golden West Chapter was publicly recognized by the Speaker of the House of Representatives during their full session, and testimony was submitted by over a dozen members of the Hawaiian ALS community at a House “Committee on Health” meeting in support of HR 68, Proposed HD 1. This legislation requests the auditor to assess the social and financial effects of requiring health insurers to provide coverage for brain injury. The bill is now making its way through the House of Representatives. As a result of our collective effort, this is the first time in Hawaii state history that the State legislature is formally recognizing the needs of the Hawaiian ALS community. May 2014 Members of the Hawaiian ALS community will join other ALS Advocates in Washington D.C. at the National ALS Advocacy Day and Public Policy Conference. The Golden West Chapter has also launched a state advocacy and public policy program to promote local and state-wide initiatives benefitting the Hawaiian ALS community. Upcoming Events:
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