People with ALS – 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…