#ALSAwarenessMonth

“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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“Lei of Remembrance” Memorial: A Fitting End to May, 2019 ALS Month-long Celebrations

Honolulu, Hawaii – It is an annual ritual – the fifth, this year – that our ALS community celebrates the Friday before the public’s Memorial Day. We bring out the signs that says, Mahalo, Hawaii!, to set the mood. Our state began celebrating “May as ALS Awareness and Families Appreciation Month,” with the Governor’s Proclamation in the Capitol, in City and County of Honolulu, and in other neighbor islands. We focused our attention into creating the social, educational, and political…

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“With Grace” Run/Walk/Roll Energizes!

           The 5th Annual “With Grace” Run/Walk/Roll went off with a bang at 8 am at Kailua Beach with a record 270 registrants making their way through Lanikai Loop. At the starting line, race coordinator, Julie Hess, stood on a cooler to thank the participants and reminded them what they were supporting – the race for a cure for ALS. After the short talk, husband Steve Hess, sounded off the horn to start the race. While…

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A Well-attended Governor Ige Proclamation!

May 11, 2019, Honolulu, Hawaii.  Last Friday, May 3, a group of community supporters attended the Governor Ige Proclamation of May as ALS Awareness and ALS Families Appreciation Month. This was the biggest group thus far in the five years of celebrating May as ALS Month in Hawaii. For the first time, the Lieutenant Governor substituted  for the governor who was not available that day.  LG Josh Green is not new to ALS families concerns.  ALSFH Board members Whittington, O’Connor,…

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Mayor Caldwell Proclamation: First ALS Awareness Month Event on Oahu

May 11, 2019, Honolulu, Hawaii. A small but dedicated group of ALS supporters skipped afternoon nap time to attend the 2:30 pm Mayor Caldwell Proclamation of “May as ALS Awareness and ALS Families Appreciation Month” at the Mayor’s Conference Room at Honolulu Hale. The simple ceremony was led by City Managing Director Roy Amemiya for the second time in as many years the Mayor Proclamation was held in Honolulu. After MD Amemiya received the lei from Ronaele, he asked the…

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