ALS awareness

Leni Marie Acosta Knight: A Gift of Art from the Heart

August 15, 2020, Kailua – Where there is kindness among people, there is hope for our human race, especially in these uncertain times. One such kind person is Leni Marie Acosta Knight, a petite, soft-spoken, unassuming lady who was still in her teens when she migrated with her family from the Philippines to join her dad in the United States. When she arrived in Hawaii, she attended school, then moved to Los Angeles, starting a career in commodities and real…

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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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MAY, 2020 AS ALS AWARENESS MONTH: WHAT’S HAPPENING, HAWAII?

Short answer is: None, in person. The past six years, Hawaii’s ALS Community celebrated May as ALS Awareness and Families Appreciation Month in many ways. Usually, the month starts with a series of Proclamations by local officials. The Governor’s Proclamation was read by the Governor in a solemn ceremony in the State Capitol Ceremony Room attended by patients, their families, caregivers, and representatives of the different service provider agencies in the state. With the pandemic continuing to rage in our…

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REFLECTIONS ON SOCIAL DISTANCING: HOW ARE WE “BEHAVING” IT?

The World Health Organization handbook, “Managing Epidemics: Key Facts about Major Deadly Diseases,” identifies four different stages: 1) Emergence: the introduction of the disease into a community;2) Localized transmission: where cases of infection sporadically appear in a community;3) Amplification: where the germ is able to transmit from person to person and causes a sustained outbreak in the community, threatening to spread beyond it; and4) Reduction: decrease of human-to-human transmission of the germ because people develop immunity and/or effective interventions to…

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Gleason House for pALS: The House that a Post-Hurricane Celebrity Built

January 14, 2020, Kailua, HI: Tomorrow, coinciding with the opening of the 116th US Congress in Washington, a man in a power wheelchair will roll on to receive the US Congressional Gold Medal of Honor, the highest civilian award given by Congress. It had been given to only 163 civilian entities, the first recipient being George Washington- the first President of the nation – in 1776. Steve Gleason, is truly a man of destiny. His celebrity arises from the confluence…

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