ALS Ice Bucket Challenge Progress
|
Our First Year of Service to the ALS Community in Hawaii
2014 marked the first year that The ALS Association Golden West Chapter officially began providing dedicated care services to people living with ALS in Hawaii. In partnership with dedicated individuals and organizations who invest in our mission, the Golden West Chapter implemented important initiatives, brought greater awareness, and established new community-based resources for the ALS community. The chapter's proven model of community and clinic-based care services, informed by the best research, help people to live longer and better with Lou Gehrig’s Disease. This system also ensures the success of our public policy initiatives and supports our relentless search for effective treatments, and ultimately a cure for ALS. Below please find more information about the Golden West Chapter’s accomplishments in Hawaii in 2014 - each made possible by your generous support of our shared vision - to create a world without ALS. PROVIDING COMPASSIONATE CARE AND SUPPORT
The Golden West Chapter serves more people with ALS than any other chapter in the country. At the end of 2014, the number of those served who live in Hawaii had grown by 153% and continues to increase as more people register with the chapter. Our community and clinic based Care Services help ensure access to vital information, equipment and resources that are essential to maintain independence and quality of life. The Golden West Chapter’s programs are always provided free of charge to people with ALS and their families. By the end of 2014, we were able to expand these services by increasing care management hours for people facing ALS on all of the islands of Hawaii, as well as the number of support groups offered. In 2014, in partnership with ALS Ohana of Hawaii, the Golden West Chapter presented a special educational seminar in Honolulu. At this event, there was an experienced panel of caregivers discussed how they used the Share The Care™ model to manage the daily challenges of caring for a loved one living with Lou Gehrig’s Disease. In addition, 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 Consortium will help coordinate the efforts of local providers and ALS service organizations to ensure that families facing ALS are connected to resources and services to support them in Hawaii. DRIVING ALS AWARENESS
The extraordinary media attention focused on the ALS Ice Bucket Challenge by both traditional and social media helped to connect new supporters with The ALS Association, while increasing awareness of Lou Gehrig’s Disease. Hawaii Walk to Defeat ALS team captains Natalie Fonda and Karen Fujii seized the opportunity to raise awareness and promote the 2014 Hawaii Walk to Defeat ALS by organizing a group to take the ALS Ice Bucket Challenge for KHON2 and KITV News. In addition Alex O’Loughlin, from the hit CBS show Hawaii Five-0, also took the Ice Bucket Challenge with cast mates Daniel Dae Kim and Jorge Garcia. Foodland’s CEO & Chairman, Jenai Wall, supported the fight against ALS by taking the Ice Bucket Challenge and calling on the Foodland main office and all Foodland store employees across Hawaii to do the same. In total, 23 Foodland and Sack-N-Save stores, main office and various departments across the company participated with nearly 300 employees taking the challenge- all with Foodland’s signature reusable grocery bags. In addition, customers were encouraged to support ALS by making a donation at checkout at any store statewide. Other notable groups in community who held Ice Bucket Challenges to support the Golden West Chapter include local representatives of Starwood Hotels and Resorts, Delta Airlines, and the Kapaa Middle School Choir and Ukulele Band. The Golden West Chapter extends a big mahalo to Mayor Carvalho, Ron Wiley of KONG radio, and County Council candidates Arryl Kaneshiro and Arthur Brun for showing their support by taking the ALS Ice Bucket Challenge at the Kauai County Fair. |
|||||
MAKING A DIFFERENCE
The Sheraton Kauai Resort supported the fight against ALS throughout the month of September, by selecting the Golden West Chapter as the beneficiary of their “You Dine, We Donate” program. All net proceeds from Table 53 in the resort’s signature restaurant, RumFire Poipu Beach, which totaled nearly $3,000, were donated in support of the ALS community in Kauai. In the 2014 Pacific Cup Race, two participants helped to raise ALS awareness and funds by naming their journey Sailing for ALS, in memory of a dear friend lost to the disease. There was a live interview with crew members and Golden West Chapter leadership on the KSSK’s Perry and Price - the #1 morning drive-time show in Hawaii. The crew placed second in their division, and 16th in the overall competition. A special aloha reception was held for their arrival, at the Kane`ohe Yacht Club in Oahu. This was a welcome addition to their ongoing support of the 4th Annual Joe Cochran Memorial Channel Race, held at the club yearly in honor of their former member who lost his battle with ALS in 2010. The 2nd Annual Hawaii Walk to Defeat ALS® took place at Kapi`olani Regional Park, Honolulu and raised over $87,000. Funds from last year’s inaugural Walk helped to establish regional Care Services for the Hawaii ALS community. Billy V from Hawaiian KINE Radio served as master of ceremonies and special guest Alex O'Loughlin from the CBS hit show, Hawaii Five-0. Also at this year's Walk was a new Golden West Chapter Advisory Trustee Lucy Wedemeyer, the surviving spouse of Hawaii's own legendary football coach, Charlie Wedemeyer. Lucy was interviewed on KSSK’s Perry and Price and HPR's Town Square, along with Golden West CHapter's President and CEO, Fred Fisher. |
|||||
PROMOTING PUBLIC POLICY INITIATIVES
Members of Hawaii’s ALS community joined other ALS advocates in Washington D.C. at the National ALS Advocacy Day and Public Policy Conference. The ALS Association Golden West Chapter was publicly recognized by the Speaker of Hawaii’s House of Representatives during its full session. Testimony was submitted by over a dozen members of Hawaii’s ALS community at a House “Committee on Health” meeting. As a result of our collective effort, this was the first time that the Hawaii legislature formally recognized the needs of the ALS community. The Golden West Chapter hosted a presentation at the Waikiki Beach Marriott Resort & Spa about the National ALS Registry – the largest ALS research project in the United States designed to collect data about people living with ALS. The National ALS Registry helps researchers better understand the risk factors and causes of ALS, which assists them in searching for targets for therapies and a cure for the disease. The ALS Association led efforts to establish the ALS Registry, working with Congress to enact the ALS Registry Act and helped secure federal funding to design, build and implement the National ALS Registry at the Centers for Disease Control (CDC) and Prevention/Agency for Toxic Substances and Disease Registry (ATSDR). Governor Neil Abercrombie proclaimed May as ALS Awareness and ALS Families Appreciation Month during a special ceremony held at the Executive Ceremonial Room at the state capitol building. Paul Gagnon, who has been living with ALS since 2006, expressed his thanks publicly on behalf of the attendees. The Golden West Chapter also received a special proclamation from Council of the City and County of Honolulu which was presented by Councilmember Joey Manahan. On the last day of ALS Awareness month, advocates gathered at the Capitol in Honolulu to remember those who have lost their battles with ALS. As the name of each person was called out, flowers were strung to make the large lei which sat on display along with photos and commemorative items. Chapter supporters also presented Kaua'i's Mayor Carvalho, with a proclamation recognizing ALS Awareness Month. ADVANCING THE SEARCH FOR A CUREAs of September 2014, The ALS Association's Translational Research Advancing Therapies (TREAT ALS) program has committed over $100 million to more than 100 active scientific research projects taking place in laboratories around the world. TREAT ALS represents some of the most promising science in the world, has led to many important discoveries in ALS research, and provides new targets for potential therapies for the disease. Thanks to the phenomenal demonstration of support for the ALS community brought by the international grassroots Ice Bucket Challenge movement, The ALS Association has developed a comprehensive, multi-year plan to invest the significant outpouring of donations to advance the search for a cure for ALS, including the launch of an innovative research initiative called the Neuro Collaborative. The creation of this cooperative alliance of world-renowned ALS researchers was spearheaded by the Golden West Chapter. |
|||||
AFFIRMING YOUR TRUST
In our first year of service to the Aloha state, we welcomed five members of Hawaii’s ALS community – Joanne “Cookie” Fujio, Jan Medusky, Victorialei ‘Nohea’ Nakaahiki, Lucy Wedemeyer, and Cheryl Williams – to the chapter’s volunteer board leadership. In addition, Charity Navigator, America's largest independent charity evaluator, has awarded The ALS Association Golden West Chapter with their highest rating possible - four stars - for a third consecutive year. This coveted designation recognizes our ongoing commitment to sound fiscal management, accountability and transparency. Only 12% of the charities receive this exceptional distinction, indicating that the Golden West Chapter outperforms most other charities in America. THANK YOU FOR YOUR SUPPORTTogether, we accomplished many goals this year in Hawaii and, with your ongoing commitment, can do so much more in 2015. Thank you for your support and please consider making a gift - large or small - to provide help and hope to the ALS community. To find out about Golden West Chapter Care Services in Hawaii, please contact To learn more about how to make a donation in support of the ALS community in Hawaii, please contact |
|
Our First Year of Service to the ALS Community in Hawaii
2014 marked the first year that The ALS Association Golden West Chapter officially began providing dedicated care services to people living with ALS in Hawaii. In partnership with dedicated individuals and organizations who invest in our mission, the Golden West Chapter implemented important initiatives, brought greater awareness, and established new community-based resources for the ALS community. The chapter's proven model of community and clinic-based care services, informed by the best research, help people to live longer and better with Lou Gehrig’s Disease. This system also ensures the success of our public policy initiatives and supports our relentless search for effective treatments, and ultimately a cure for ALS. Below please find more information about the Golden West Chapter’s accomplishments in Hawaii in 2014 - each made possible by your generous support of our shared vision - to create a world without ALS. PROVIDING COMPASSIONATE CARE AND SUPPORT
The Golden West Chapter serves more people with ALS than any other chapter in the country. At the end of 2014, the number of those served who live in Hawaii had grown by 153% and continues to increase as more people register with the chapter. Our community and clinic based Care Services help ensure access to vital information, equipment and resources that are essential to maintain independence and quality of life. The Golden West Chapter’s programs are always provided free of charge to people with ALS and their families. By the end of 2014, we were able to expand these services by increasing care management hours for people facing ALS on all of the islands of Hawaii, as well as the number of support groups offered. In 2014, in partnership with ALS Ohana of Hawaii, the Golden West Chapter presented a special educational seminar in Honolulu. At this event, there was an experienced panel of caregivers discussed how they used the Share The Care™ model to manage the daily challenges of caring for a loved one living with Lou Gehrig’s Disease. In addition, 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 Consortium will help coordinate the efforts of local providers and ALS service organizations to ensure that families facing ALS are connected to resources and services to support them in Hawaii. DRIVING ALS AWARENESS
The extraordinary media attention focused on the ALS Ice Bucket Challenge by both traditional and social media helped to connect new supporters with The ALS Association, while increasing awareness of Lou Gehrig’s Disease. Hawaii Walk to Defeat ALS team captains Natalie Fonda and Karen Fujii seized the opportunity to raise awareness and promote the 2014 Hawaii Walk to Defeat ALS by organizing a group to take the ALS Ice Bucket Challenge for KHON2 and KITV News. In addition Alex O’Loughlin, from the hit CBS show Hawaii Five-0, also took the Ice Bucket Challenge with cast mates Daniel Dae Kim and Jorge Garcia. Foodland’s CEO & Chairman, Jenai Wall, supported the fight against ALS by taking the Ice Bucket Challenge and calling on the Foodland main office and all Foodland store employees across Hawaii to do the same. In total, 23 Foodland and Sack-N-Save stores, main office and various departments across the company participated with nearly 300 employees taking the challenge- all with Foodland’s signature reusable grocery bags. In addition, customers were encouraged to support ALS by making a donation at checkout at any store statewide. Other notable groups in community who held Ice Bucket Challenges to support the Golden West Chapter include local representatives of Starwood Hotels and Resorts, Delta Airlines, and the Kapaa Middle School Choir and Ukulele Band. The Golden West Chapter extends a big mahalo to Mayor Carvalho, Ron Wiley of KONG radio, and County Council candidates Arryl Kaneshiro and Arthur Brun for showing their support by taking the ALS Ice Bucket Challenge at the Kauai County Fair. |
|||||
MAKING A DIFFERENCE
The Sheraton Kauai Resort supported the fight against ALS throughout the month of September, by selecting the Golden West Chapter as the beneficiary of their “You Dine, We Donate” program. All net proceeds from Table 53 in the resort’s signature restaurant, RumFire Poipu Beach, which totaled nearly $3,000, were donated in support of the ALS community in Kauai. In the 2014 Pacific Cup Race, two participants helped to raise ALS awareness and funds by naming their journey Sailing for ALS, in memory of a dear friend lost to the disease. There was a live interview with crew members and Golden West Chapter leadership on the KSSK’s Perry and Price - the #1 morning drive-time show in Hawaii. The crew placed second in their division, and 16th in the overall competition. A special aloha reception was held for their arrival, at the Kane`ohe Yacht Club in Oahu. This was a welcome addition to their ongoing support of the 4th Annual Joe Cochran Memorial Channel Race, held at the club yearly in honor of their former member who lost his battle with ALS in 2010. The 2nd Annual Hawaii Walk to Defeat ALS® took place at Kapi`olani Regional Park, Honolulu and raised over $87,000. Funds from last year’s inaugural Walk helped to establish regional Care Services for the Hawaii ALS community. Billy V from Hawaiian KINE Radio served as master of ceremonies and special guest Alex O'Loughlin from the CBS hit show, Hawaii Five-0. Also at this year's Walk was a new Golden West Chapter Advisory Trustee Lucy Wedemeyer, the surviving spouse of Hawaii's own legendary football coach, Charlie Wedemeyer. Lucy was interviewed on KSSK’s Perry and Price and HPR's Town Square, along with Golden West CHapter's President and CEO, Fred Fisher. |
|||||
PROMOTING PUBLIC POLICY INITIATIVES
Members of Hawaii’s ALS community joined other ALS advocates in Washington D.C. at the National ALS Advocacy Day and Public Policy Conference. The ALS Association Golden West Chapter was publicly recognized by the Speaker of Hawaii’s House of Representatives during its full session. Testimony was submitted by over a dozen members of Hawaii’s ALS community at a House “Committee on Health” meeting. As a result of our collective effort, this was the first time that the Hawaii legislature formally recognized the needs of the ALS community. The Golden West Chapter hosted a presentation at the Waikiki Beach Marriott Resort & Spa about the National ALS Registry – the largest ALS research project in the United States designed to collect data about people living with ALS. The National ALS Registry helps researchers better understand the risk factors and causes of ALS, which assists them in searching for targets for therapies and a cure for the disease. The ALS Association led efforts to establish the ALS Registry, working with Congress to enact the ALS Registry Act and helped secure federal funding to design, build and implement the National ALS Registry at the Centers for Disease Control (CDC) and Prevention/Agency for Toxic Substances and Disease Registry (ATSDR). Governor Neil Abercrombie proclaimed May as ALS Awareness and ALS Families Appreciation Month during a special ceremony held at the Executive Ceremonial Room at the state capitol building. Paul Gagnon, who has been living with ALS since 2006, expressed his thanks publicly on behalf of the attendees. The Golden West Chapter also received a special proclamation from Council of the City and County of Honolulu which was presented by Councilmember Joey Manahan. On the last day of ALS Awareness month, advocates gathered at the Capitol in Honolulu to remember those who have lost their battles with ALS. As the name of each person was called out, flowers were strung to make the large lei which sat on display along with photos and commemorative items. Chapter supporters also presented Kaua'i's Mayor Carvalho, with a proclamation recognizing ALS Awareness Month. ADVANCING THE SEARCH FOR A CUREAs of September 2014, The ALS Association's Translational Research Advancing Therapies (TREAT ALS) program has committed over $100 million to more than 100 active scientific research projects taking place in laboratories around the world. TREAT ALS represents some of the most promising science in the world, has led to many important discoveries in ALS research, and provides new targets for potential therapies for the disease. Thanks to the phenomenal demonstration of support for the ALS community brought by the international grassroots Ice Bucket Challenge movement, The ALS Association has developed a comprehensive, multi-year plan to invest the significant outpouring of donations to advance the search for a cure for ALS, including the launch of an innovative research initiative called the Neuro Collaborative. The creation of this cooperative alliance of world-renowned ALS researchers was spearheaded by the Golden West Chapter. |
|||||
AFFIRMING YOUR TRUST
In our first year of service to the Aloha state, we welcomed five members of Hawaii’s ALS community – Joanne “Cookie” Fujio, Jan Medusky, Victorialei ‘Nohea’ Nakaahiki, Lucy Wedemeyer, and Cheryl Williams – to the chapter’s volunteer board leadership. In addition, Charity Navigator, America's largest independent charity evaluator, has awarded The ALS Association Golden West Chapter with their highest rating possible - four stars - for a third consecutive year. This coveted designation recognizes our ongoing commitment to sound fiscal management, accountability and transparency. Only 12% of the charities receive this exceptional distinction, indicating that the Golden West Chapter outperforms most other charities in America. THANK YOU FOR YOUR SUPPORTTogether, we accomplished many goals this year in Hawaii and, with your ongoing commitment, can do so much more in 2015. Thank you for your support and please consider making a gift - large or small - to provide help and hope to the ALS community. To find out about Golden West Chapter Care Services in Hawaii, please contact To learn more about how to make a donation in support of the ALS community in Hawaii, please contact |
