#HawaiiALS – 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…

Donate to ALSFH through Foodland’s “Give Aloha” Campaign

August 23, 2020

ALS Philanthropy, Fundraising Project, Hawaii ALS Residence, News, Partners

August 23, 2020, Kailua, HI. – According to Wikipedia, an Irish immigrant, Maurice J. “Sully” Sullivan and See Goo Lau together founded Foodland Super Markets – the oldest, largest, and only locally-owned supermarket chain in Hawaii. The grocery store chain is in all islands although some have been closed recently due to competition from big-box stores, according to Jenai S. Wall, Sullivan’s daughter and current company President and CEO. Despite these changes, Foodland continues to hold its annual “Give Aloha”…

Leni Marie Acosta Knight: A Gift of Art from the Heart

August 17, 2020

ALS awareness, ALS Philanthropy, Fundraising Project, Hawaii ALS Residence, News, Partners

August 15, 2020, Kailua – Where there is kindness among people, there is hope for our human race, especially in these uncertain times. One such kind person is Leni Marie Acosta Knight, a petite, soft-spoken, unassuming lady who was still in her teens when she migrated with her family from the Philippines to join her dad in the United States. When she arrived in Hawaii, she attended school, then moved to Los Angeles, starting a career in commodities and real…

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…

ALSFH Board Meets with Hawaii LG Green and St. Francis CEO Jerry Correa

July 20, 2020

Hawaii ALS Residence, Meetings, Partners

July 20, 2020, Kailua. Last month, our ALSFH Board of Directors met with both Lieutenant Governor Josh Green and St. Francis Healthcare System CEO/President Jerry Correa via Zoom to discuss the next steps towards an ALS Residence in Hawaii. After approval of ALSFH non-profit status in 2107, Board members Robillard, O’Connor, and Whittington met with Correa following the ALS Residence Initiative (ALSRI) recommendation for partnership with a non-profit, respected skilled nursing facility which shall provide the care required in an…

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…

MAY, 2020 AS ALS AWARENESS MONTH: WHAT’S HAPPENING, HAWAII?

May 2, 2020

ALS awareness, Events, News, Presentations

Short answer is: None, in person. The past six years, Hawaii’s ALS Community celebrated May as ALS Awareness and Families Appreciation Month in many ways. Usually, the month starts with a series of Proclamations by local officials. The Governor’s Proclamation was read by the Governor in a solemn ceremony in the State Capitol Ceremony Room attended by patients, their families, caregivers, and representatives of the different service provider agencies in the state. With the pandemic continuing to rage in our…

“Lei of Remembrance” Memorial: A Fitting End to May, 2019 ALS Month-long Celebrations

June 17, 2019

ALS awareness, Events

Honolulu, Hawaii – It is an annual ritual – the fifth, this year – that our ALS community celebrates the Friday before the public’s Memorial Day. We bring out the signs that says, Mahalo, Hawaii!, to set the mood. Our state began celebrating “May as ALS Awareness and Families Appreciation Month,” with the Governor’s Proclamation in the Capitol, in City and County of Honolulu, and in other neighbor islands. We focused our attention into creating the social, educational, and political…