#ALS

Online Auction To Fund Lifesaving Treatment For Local Artist Eric Chun

September 23, 2021, Honolulu, HI – Local artist, waterman, and small business owner Eric Chun announced the launch of an online auction today to raise funds for lifesaving therapy in his battle against a disease that has taken multiple members of his family. Since his 2018 diagnosis of ALS, Eric has received cutting edge treatments in San Diego instrumental in prolonging his life and delaying debilitating disability. Eric now seeks to participate in a new treatment therapy which has shown…

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Her Words, Not Mine

Part of our mission is making people aware about what life with ALS is like for both patient and his family. Prior to the pandemic, I was regularly invited to speak before groups, opportunities which I rarely refuse. I have been a nurse educator all my life and have tried every way of presenting material so it becomes vivid to my audience, so that they come away more understanding of the material. When I come short of that expectation, I…

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Rita Melville Alarcon: “… Breastless” But SO MUCH more!

In 2015, Rita’s mom, Patricia, started experiencing slurred speech and progressive weakness. Living in Hawaii while her children were in the mainland, Patricia kept her health concerns to herself. When she could no longer keep it a secret, her disability had gone much further along.  When they learned, Rita and her siblings flailed around in shock. Eventually, they were able to negotiate among themselves the best way they could care for Mom, considering many factors, not the least of which…

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August Babies: Katherine and Divina Request Donations for Birthdays

August 24, 2020, Kailua. – The pandemic has dramatically and irrevocably changed the landscape of life on earth. In the non-profit sector, fundraising is made more difficult by the combination of continuing need for public support and the restrictions on in-person contact. Consequently, non-profits switch to socially distant ways of requesting for needed support. We, at ALSFH, are still understanding the challenges of fundraising mainly by social media. Aside from being a non-techie three-member Board,  we also have no paid…

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St. Francis Healthcare Sponsors ALS Caregiver Class

8 August 2020, Kailua – In the past two years, I have been teaching in-person classses for the St Francis Healthcare Family Caregiver Program twice a year. In the beginning, Shaun and Renee Brewer would accompany me so that a pALS’s perspective would enhance the presentation. For the past two times, Sandy and John Repczynski have taken over from the Brewers. Like much of everything, the current pandemic has forced the classes to be reconfigured; instead of in-person, they will…

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“Lei of Remembrance” Memorial Ceremony, 2020 Edition

23 May, 2020, Kailua, HI. This year, the “Lei of Remembrance ceremony will be presented in video form. Every year for the past six years, the annual celebration – the ultimate culminating annual May event here in Hawaii – has been held in the courtyard of the State Capitol. In support of the State’s plan to stem the pandemic, the ceremony will be streamed for the first time on 29 May, Friday at 5-5:30pm. Streaming site will be announced midweek.…

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IN LIEU OF “WITH GRACE” RUN/WALK, A T-SHIRT FUNDRAISER

The Annual “With Grace” Run/walk was canceled this year. Julie Hess, coordinator of the annual event, replaced it with an online Shirt Fundraiser on CustomInk, which will continue until May 16. “There are five different styles of shirts,” enthused Julie,” We originally set a goal of 50 purchases. I am happy to see that we have exceeded the goal. Mahalo to everyone who has helped. It means so much to my family as well as to Jeff’s.” Steve and Julie…

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FACEBOOK FUNDRAISER GAINS $400 FOR ALSFH FOR #GIVINGTUESDAY

May 13, 2020, Kailua, HI.  Participating in the global giving movement, #GivingTuesday, Divina Robillard started a fundraiser on her Facebook profile page with an initial goal of $200. Within two hours, the goal was met. “I was thrilled and awed! My network of close friends know how near and dear ALSFH is to my heart. Truly, the world continues to be generous despite Covid-19,” says a grateful Divina. To stimulate more giving, Divina pushed the goal post to $400, which…

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Governor Ige’s and Mayor Caldwell’s Proclamations

May 13, 2020, Kailua, HI. Both the State Capitol and Honolulu Hale are closed to the public because of health requirements due to the current pandemic. On May 8, Friday, Governor Ige’s Proclamation of May, 2020 as ALS Awareness Month was received via email. The hard copy was not available although it had been requested. May 8 would have been the day when the ALS Community in Hawaii attends a solemn celebration at the Ceremony Room at the State Capitol…

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A FRONTLINE NURSE’S EXPERIENCE WITH DAD’S ALS

May 13, 2020, Kailua, HI.   Norgen Orpilla Dalit was an experienced nurse from the Philippines when she came to the US in 1991. Her older sister, also a nurse, had sent her to nursing school, for which Norgen has remained specially thankful. While in the Philippines, she worked in the OR and OB-GYN Labor and Delivery. Prior to finally settling in the US, she first detoured to Saudi Arabia, becoming part of the huge nursing force recruited from the…

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