admin – ALS Foundation of Hawaii

May 26, 2023: Sign-Waving and “Lei of Remembrance” Memorial Ceremony

May 31, 2023

ALS awareness, Events, May is ALS Awareness Month, News, pALS, People with ALS

The Friday before Memorial Day, I drove to this quaint, orchid shop in Kahaluu, past the elementary school into this unassuming driveway where a small, barn-like shed with galvanized iron sheets for walls, houses a busy work arrangement of tables and chairs topped by all manner of workshop paraphernalia. A tall, lean, elderly lady with an envy-producing, ramrod-straight back, charmingly welcomes me with a smile. She knows what I came for – the 300+ purple dendrobium orchids that I will…

May 12, 2023: Proclamation Day at the Capitol

May 28, 2023

ALS awareness, Events, Hawaii ALS Residence, May is ALS Awareness Month, People with ALS, Proclamation Day

Tradition- that’s what assures that important things are given due prominence and serve to ensure continuity. Every year, May has always been celebrated as ALS Awareness Month. Here in Hawaii Nei, we don’t only believe that we need to be aware of the concerns of our ALS community, we also need to recognize the enormous responsibility families carry on by living with ALS daily! For the first time since 2019, we trekked to the Capitol to meet with our other…

Remembering Vi Jones-Medusky: A Pioneer Planner for an ALS Residence for Hawaii

March 30, 2023

#NurseFrontliner, ALS Residence, Hawaii ALS Residence, Hawaii ALS Residence, People with ALS, People with ALS, Sharing stories

As we were adjourning from last Tuesday’s Regular Monthly BOD Meeting, Ronaele Whittington, brought up Violet Jones-Medusky. “Didn’t Vi pass away in late March?” Ronaele mused. Honestly, I can’t remember – I have been in many funerals of friends who have passed with ALS in the almost 40 years I’ve been involved with ALS in Hawaii. As memorable as Vi was – and should be in matters ALS in Hawaii – there have been just too many deaths to cram…

Status Report 2022

March 14, 2023

ALSFHPlans, Annual Report 2022, Plans 2023, Status Report

This report covers the year 2022 from January 1 to December 31. It shall attempt to describe activities held to accomplish the five major tasks/objectives, namely: 1) integration in the community; 2) service provision; 3) board development; 4) fund development; and 5) partner/organizational development. TASK/OBJECTIVE: INTEGRATION IN THE COMMUNITY Continuing to Cultivate a Community Presence. Even with reportedly better containment of the virus worldwide, the effect of the pandemic on social interaction has lingered through the first four months of…

Christmas Caroling: A Delightful Service and Tradition**

January 7, 2023

ALS awareness, ALSFH Christmas Message, Christmas Party, ChristmasCelebrations, Events, Partners, Service provision, volunteers

The pandemic years certainly put a damper on a number of activities worth doing, especially those that encourage socializing and connecting with fellow human beings. Sighs of relief were exhaled all over the world when the pandemic’s scourge was cut to a manageable level. Things are inching towards normal, including the revival of Christmas traditions that were severely verboten in the past two years. One of these is Christmas caroling. On December 13 last year, an opportunity arose for a…

#GivingTuesday: “Let the sun shine through…”

November 26, 2022

#GivingTuesday2022, ALS awareness, ALS Residence, Hawaii ALS Residence, Help pALS, People with ALS

The basest of species, we are told, simply do not have the physical structure to provide the basis for complex emotions such as compassion. Paramecia and reptiles just don’t have it in them to feel anything beyond self-preserving “reactions” such as when in pain. Only more developed species have awareness beyond themselves that shows “others” as something more than their next meal. I’m talking generalities here (I have to qualify my statement, before someone who’s watched Jurassic Park points out,…

Celebrating May, 2022: Year Three of the Pandemic

April 21, 2022

#ALSinCOVID, ALS awareness, Events, Fundraising Project, Hawaii ALS Residence, May is ALS Awareness Month

For as long as I can remember, the fifth month of every year is celebrated as ALS Awareness and Families Appreciation Month in our community. And May is in a few days! The celebrations always start with the Governor issuing a proclamation to that effect and since the first proclamation, it had been always been held in the Governor’s Ceremony Room in the State Capitol surrounded by serious looking portraits of former governors hanging from dignified wall panels of koa…

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

January 7, 2022

Hawaii ALS Residence, News, Status Report, 2017-2021

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…

Our Christmas Message to You: Thank You For Your Support!

December 24, 2021

ALS awareness, ALSFH Christmas Message, Hawaii ALS Residence, Help pALS

At the First Christmas, Mary and Joseph’s task at hand was to find a place where the Messiah was to be born. In some ways, ALS Foundation of Hawaii has a similar mission: search for a place in which a tale of redemption could begin. People with ALS (pALS) who decide to live with ALS need a place where their potential for growth and development, may find fulfillment; not just a place to die in. Despite the relentless wretchedness of…

Julie Hess: An Eye for Art, A Heart for Earth

November 16, 2021

Events, Partners, volunteers

One doesn’t have to be a global leader nor a scientist to understand the impact of climate change on our planet. Among other things, small island-states like our own in the vast Pacific stand to bear the brunt of rising waters. This situation was made visually starker in a recent speech on the impact of global warming by Tuvalu’s minister delivered and filmed while knee-deep in ocean water. It was another global disaster – still possibly triggered by relentless development…