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Spotlight On… The History of Supporting Hawaii’s ALS Community

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For decades, people with ALS and their families living in the state of Hawaii would have to travel to the mainland in order to have access to care and resources. But, in 2010, that history was about to change, thanks to a dedicated volunteer who shared her story at a Golden West Chapter Walk to Defeat ALS.

“The Walk to Defeat ALS has significant meaning to my family,” said Victoria “Nohea” Nakaahiki. “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 this devastating disease impacted our entire family. After my husband’s death, we decided to return to Monterey to Walk in his memory, and I was committed to raising awareness and support to help more people with ALS and their families here on the islands.”

As a result of Nohea sharing her experiences with leadership of the Golden West Chapter, our Board of Directors championed the need for ongoing support for these ALS families. For almost three years, Chapter staff and many volunteers engaged in ALS advocacy efforts in Hawaii – at the federal, state, and local level – and worked to establish Hawaii as a region within the service area of the Golden West Chapter. 

In September 2013, thanks to the efforts of many dedicated supporters and caring volunteers, the inaugural Hawaii Walk to Defeat ALS was launched, as was a special educational symposium featuring ALS experts discussing important aspects of clinical care and promising developments in research. Soon after, on October 11, 2013, the Golden West Chapter welcomed the Aloha state into our service area and, in February 2014, began providing direct assistance in Hawaii to people with ALS and their families.

It has now been more than 12 years since the journey to provide support for Hawaii’s ALS community began. This year marks the 10th Anniversary of the Hawaii Walk to Defeat ALS, which, to date, has raised over $1 million dollars thanks to dedicated volunteers and supporters in support of our mission priorities in Hawaii. During this time, the Golden West Chapter has been able to expand our local care services and increase access to care and resources for people living with ALS and loved ones across the entire state. 

We invite you to learn more about the Chapter resources in Hawaii, to read the stories of many people within our ALS community, and to get involved in local events, like our open house on Saturday, July 9 and the Hawaii Walk to Defeat ALS on Saturday, September 17. All funds raised by the Golden West Chapter in Hawaii are reinvested in Hawaii’s ALS community.  

American cultural anthropologist, Margaret Mead once said, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”  It is through the active participation of the ALS community, that have made these significant accomplishments and, with your continued support, we will be able to do even more.

It is only together that we will defeat ALS.

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