#ALSResidenceinHawaii

ALS Foundation of Hawaii: Status Report as of December 31, 2021

ALS FOUNDATION OF HAWAII STATUS REPORT as of DECEMBER 31, 2021 I. INTRODUCTION When we developed the concept for the ALS Foundation of Hawaii in 2016-17, we agreed to have one mission: to establish an ALS RESIDENCE that would provide the kind of long-term humane and effective specialty care that people with ALS (pALS) required and deserved using state-of-the-art technology. In the intervening years, however, we quickly learned that the festering need for short-term respite care for family caregivers has…

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On Christmas Eve

One of the most difficult things to do is to gather one’s thoughts THIS close to THE most artificial deadline of all time! Before today, all important things such as the Christmas brunch and dinner menus and what games to play this year, shall have been discussed and laid out days ago, before the store runs out of honey-glazed ham and before all the pan de sal is sold out. Preferably after Thanksgiving dinner… or maybe during Thanksgiving dinner, while…

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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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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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Brian Burke, Katherine’s Li’l Brother, Dies at 61

Brian Burke’s life story was not always a sad one.  He was born the youngest of five children to Cecilia and Darrell Burke.  Like any health boy, Brian grew up with his family, which included Big Sis Katherine, in Benton Harbor, Michigan.  Early life was the usual – elementary, high school, an Associate degree in college. He didn’t engage in any sport but football and basketball occupied his interest as a bed-bound spectator in the years he had ALS. Sometime before 2002, when…

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MAHALO, St. John Apostle and Evangelist Parish, for ALSFH Display Corner

July 23, 2019, Kailua, Hawaii. Last Saturday, July 20, 2019, The St. John Apostle and Evangelist (SJAE) Parish in Mililani staged its first ever Health and Well-being Fair at the Kipapa Park grounds. The fair was organized by the parish’s Health Ministry Committee, ably led by retired nurse Bonnie delos Santos. After the invocation and warmup Tai Chi exercises led by a community volunteer, Wini Fronda of Humana and parishioner Steven Santiago led the walk around the park perimeter. It…

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Follow-up Meeting with Lieutenant Governor Josh Green

May 11, 2019, Honolulu, HI.  A follow-up meeting following the short encounter with Lieutenant Governor (LG) Josh Green on Friday of the Governor Proclamation was intensely gratifying to those who were present: Shaun Brewer, an Army veteran with ALS; Brandi, his paid caregiver; Katherine O’Connor, ALSFH Treasurer, and I. In the hour-long meeting at the LG’S comfortable meeting room with a wall-long stunning view of downtown Honolulu, we discussed the different options for location and sponsorship for an ALS Hale…

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