What’s New

Show Your Stripes: Rare Disease Day

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…

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On Christmas Eve

One of the most difficult things to do is to gather one’s thoughts THIS close to THE most artificial deadline of all time! Before today, all important things such as the Christmas brunch and dinner menus and what games to play this year, shall have been discussed and laid out days ago, before the store runs out of honey-glazed ham and before all the pan de sal is sold out. Preferably after Thanksgiving dinner… or maybe during Thanksgiving dinner, while…

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Our Year Thus Far, and the Fate of our Annual Holiday Party

You may have heard: our annual Hawaii ALS Community Christmas (Holiday) Party is not happening this year. Our venue for the past two years, the Honolulu Central Seventh Day Adventist Church, is not open for a party or crowds more than the number allowed by the health authorities. As a testament to the careful vigilance of our families, our community has not reported any case of coronavirus (knock on wood) thus far, and we’d like to keep it that way.…

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

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…

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August Babies: Katherine and Divina Request Donations for Birthdays

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…

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

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”…

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

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…

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St. Francis Healthcare Sponsors ALS Caregiver Class

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…

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