ALS awareness – 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…

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…

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…

Justin Hendrix: “This is the End…NOT!’

November 7, 2021

ALS awareness, Books About ALS, Fundraising Project, Help pALS, pALS, Sharing stories

Finally! Justin Hendrix’s book has come off the press. “This is Not the End”, a self-published collection of personal experiences, heartwarmingly describes Justin’s life starting from when he heard from doctors in 2012 that he was terminally ill with ALS and what he did with what he thought was left of his life following that grave pronouncement. While working on our brochure in early 2018, four people with ALS agreed to have their images on the brochure as the “faces”…

The Quest for Donated Wealth: My Take on the Mackenzie Money

July 23, 2021

ALS awareness, ALS Philanthropy, Hawaii ALS Residence, Help pALS

The recent news about marital splits among the two wealthiest couples who also happen to be the source of staggering amounts of money given to philanthropy has created a brouhaha amongst us in the non-profit world. We in the Board speculated with interest what the divorces meant – and it’s not because we have in any direct way benefitted from the Bezos or Gates fortune before the splits. We are just too far from the center of wealth to attract…

May 2021 as ALS Awareness Month

May 4, 2021

#ALSinCOVID, ALS awareness, Hawaii ALS Residence, Help pALS, May is ALS Awareness Month

…THEREFORE I, DAVID Y. IGE, Governor of the State of Hawaii, do hereby proclaim May 2021 as “ALS AWARENESS MONTH” in Hawaii and encourage citizens of the Aloha State to join me in raising awareness of ALS, support the efforts to combat the disease, and honor the patients and families who are demonstrating extraordinary resilience and resourcefulness while living with ALS….

MAY 2021 as ALS Awareness and Families Appreciation Month

April 21, 2021

#ALSinCOVID, ALS awareness, Events, May is ALS Awareness Month, News

We look back with fondness to the time when we were able to gather to celebrate May as OUR month. This coming May is the second during this time of Covid pandemic. Hawaii, like most states in the continental US is still under restrictions for public health security. Thus, our normally highly participated celebratory events are going to be just as quiet like last year’s. However, our efforts at bringing awareness to the community are no less robust and has…