ALSRESIDENCE – ALS Foundation of Hawaii

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…

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…

Richard Tran: Helping Build an ALS Residence for Hawaii, One Burger at a Time

May 6, 2021

#ALSinCOVID, Fundraising Project, Helpin pALS, Sharing stories, volunteers

My niece, Darlene, who is one-half of my so-called “IT Department,” invited a couple of her friends from Seattle to spend a week on Oahu. One of them was Richard who laughed his funny way into our hearts. He ended up extending his stay into Christmas, to participate in our annual holiday shenanigans, usually orchestrated by the young people in my big Filipino family. In short, my family took to him as he fell in love with Oahu hard. He…

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….

Her Words, Not Mine

April 7, 2021

ALS awareness, Helpin pALS, Networking/Learning Opportunities, Sharing stories

Part of our mission is making people aware about what life with ALS is like for both patient and his family. Prior to the pandemic, I was regularly invited to speak before groups, opportunities which I rarely refuse. I have been a nurse educator all my life and have tried every way of presenting material so it becomes vivid to my audience, so that they come away more understanding of the material. When I come short of that expectation, I…