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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…

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…

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….

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…

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…

National Vietnam War Veterans Day: Why We Should Care?

March 26, 2021

vALS, Veterans with ALS

The Vietnam War, also called the Second Indochinese War, was the longest war in United States history. That era was also a very divisive time in the United States, as well as through much of Europe and Australia. Many veterans didn’t return to parades down Main Street, didn’t receive the proper amount of recognition for their service, or were the focus of much protest. These veterans would come home to a country divided over the debate about the war. Many…

Show Your Stripes: Rare Disease Day

February 23, 2021

ALS awareness, ALS Philanthropy, ALSisAraredisease

I wonder if people are even aware that there is such a community. Probably not; until just a few years ago, our Katherine introduced me to a lady who advocates for this group. I even remember being interviewed, with Katherine, for Olelo to shed light on two of the more than 7,000 illnesses that are considered rare. Katherine talked about glioblastoma and I discussed ALS. Katherine could have covered both – since two of her brothers had rare diseases AND…