ALS awareness

“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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An Open Letter to Bill Gates, on the Occasion of Receiving the Professor Hawking Fellowship Award

  Dear Bill, I just read your 2019 Professor Hawking Fellowship lecture delivered in Cambridge. I am grateful that you have taken up global health as focus for your philanthropy. My background is public (international) health, so I understood every bit of your concern.  I was born in the Philippines when it was still a developing nation.  In 1976, after graduation from Nursing, I joined the faculty of the UP Institute of Health Sciences. At that time, it was creating…

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Topical Presentations Keep ALSFH in Community’s Mind

October 23, 2019, Kailua, HI. Requests from a number of community-based organizations for presentations on several topics of interest, varying from “Exercises for the Elderly,” to “Nursing Management of the Patient with ALS,” keep ALSFH and its mission in the minds of the audience. It is customary to save a few minutes after presentations for a short spiel on ALSFH. Maylynn Wong, Manager of St. Francis Healthcare Volunteer Programs, organizes course offerings for groups of family caregivers interested in a…

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