Hawaii ALS Residence – 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…

Celebrating May, 2022: Year Three of the Pandemic

April 21, 2022

#ALSinCOVID, ALS awareness, Events, Fundraising Project, Hawaii ALS Residence, May is ALS Awareness Month

For as long as I can remember, the fifth month of every year is celebrated as ALS Awareness and Families Appreciation Month in our community. And May is in a few days! The celebrations always start with the Governor issuing a proclamation to that effect and since the first proclamation, it had been always been held in the Governor’s Ceremony Room in the State Capitol surrounded by serious looking portraits of former governors hanging from dignified wall panels of koa…

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…

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…

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….

August Babies: Katherine and Divina Request Donations for Birthdays

August 24, 2020

#ALSinCOVID, ALS Philanthropy, Fundraising Project, Hawaii ALS Residence

August 24, 2020, Kailua. – The pandemic has dramatically and irrevocably changed the landscape of life on earth. In the non-profit sector, fundraising is made more difficult by the combination of continuing need for public support and the restrictions on in-person contact. Consequently, non-profits switch to socially distant ways of requesting for needed support. We, at ALSFH, are still understanding the challenges of fundraising mainly by social media. Aside from being a non-techie three-member Board, we also have no paid…

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…

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…