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…
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…
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…
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…
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…
23 May, 2020, Kailua, HI. This year, the “Lei of Remembrance ceremony will be presented in video form. Every year for the past six years, the annual celebration – the ultimate culminating annual May event here in Hawaii – has been held in the courtyard of the State Capitol. In support of the State’s plan to stem the pandemic, the ceremony will be streamed for the first time on 29 May, Friday at 5-5:30pm. Streaming site will be announced midweek.…
The Annual “With Grace” Run/walk was canceled this year. Julie Hess, coordinator of the annual event, replaced it with an online Shirt Fundraiser on CustomInk, which will continue until May 16. “There are five different styles of shirts,” enthused Julie,” We originally set a goal of 50 purchases. I am happy to see that we have exceeded the goal. Mahalo to everyone who has helped. It means so much to my family as well as to Jeff’s.” Steve and Julie…
May 13, 2020, Kailua, HI. Participating in the global giving movement, #GivingTuesday, Divina Robillard started a fundraiser on her Facebook profile page with an initial goal of $200. Within two hours, the goal was met. “I was thrilled and awed! My network of close friends know how near and dear ALSFH is to my heart. Truly, the world continues to be generous despite Covid-19,” says a grateful Divina. To stimulate more giving, Divina pushed the goal post to $400, which…
May 13, 2020, Kailua, HI. Both the State Capitol and Honolulu Hale are closed to the public because of health requirements due to the current pandemic. On May 8, Friday, Governor Ige’s Proclamation of May, 2020 as ALS Awareness Month was received via email. The hard copy was not available although it had been requested. May 8 would have been the day when the ALS Community in Hawaii attends a solemn celebration at the Ceremony Room at the State Capitol…
