Sharing stories – ALS Foundation of Hawaii

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…

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”…

Online Auction To Fund Lifesaving Treatment For Local Artist Eric Chun

September 23, 2021

Help pALS, Helpin pALS, Sharing stories, Uncategorized

September 23, 2021, Honolulu, HI – Local artist, waterman, and small business owner Eric Chun announced the launch of an online auction today to raise funds for lifesaving therapy in his battle against a disease that has taken multiple members of his family. Since his 2018 diagnosis of ALS, Eric has received cutting edge treatments in San Diego instrumental in prolonging his life and delaying debilitating disability. Eric now seeks to participate in a new treatment therapy which has shown…

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…

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…

Veterans with ALS: A Tale of Two Men

November 10, 2020

ALS awareness, News, Sharing stories, vALS, Veterans with ALS

Rita Melville Alarcon: “… Breastless” But SO MUCH more!

October 25, 2020

ALS awareness, News, Sharing stories

In 2015, Rita’s mom, Patricia, started experiencing slurred speech and progressive weakness. Living in Hawaii while her children were in the mainland, Patricia kept her health concerns to herself. When she could no longer keep it a secret, her disability had gone much further along. When they learned, Rita and her siblings flailed around in shock. Eventually, they were able to negotiate among themselves the best way they could care for Mom, considering many factors, not the least of which…

St. Francis Healthcare Sponsors ALS Caregiver Class

August 6, 2020

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

8 August 2020, Kailua – In the past two years, I have been teaching in-person classses for the St Francis Healthcare Family Caregiver Program twice a year. In the beginning, Shaun and Renee Brewer would accompany me so that a pALS’s perspective would enhance the presentation. For the past two times, Sandy and John Repczynski have taken over from the Brewers. Like much of everything, the current pandemic has forced the classes to be reconfigured; instead of in-person, they will…

A FRONTLINE NURSE’S EXPERIENCE WITH DAD’S ALS

May 13, 2020

#ALSinCOVID, #NurseFrontliner, ALS awareness, News, Sharing stories

May 13, 2020, Kailua, HI. Norgen Orpilla Dalit was an experienced nurse from the Philippines when she came to the US in 1991. Her older sister, also a nurse, had sent her to nursing school, for which Norgen has remained specially thankful. While in the Philippines, she worked in the OR and OB-GYN Labor and Delivery. Prior to finally settling in the US, she first detoured to Saudi Arabia, becoming part of the huge nursing force recruited from the…