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…
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…
January 14, 2020, Kailua, HI: Tomorrow, coinciding with the opening of the 116th US Congress in Washington, a man in a power wheelchair will roll on to receive the US Congressional Gold Medal of Honor, the highest civilian award given by Congress. It had been given to only 163 civilian entities, the first recipient being George Washington- the first President of the nation – in 1776. Steve Gleason, is truly a man of destiny. His celebrity arises from the confluence…
July 20, 2019, Honolulu, HI. Every month for their Signature Events, Pacific Business News (PBN) features a non-profit the news journal determines best fits the theme for the event. Among others, the recognition awards inclusion of logo in the marketing instruments for the event, a display table to showcase the non-profit’s mission, lunch for two representatives from the NP, and an opportunity to network with the other participants. On July 18, 2019, PBN featured ALSFH for its signature event “State…
24 April 2019, Kailua, HI. Dr. Matteo Zallio presented a talk on “Lifelong housing design: user feedback evaluation of smart objects and accessible housing for older adults” yesterday, which Ronaele and I attended. It was held at Gartley Hall 018 at the University of Hawaii. Dr. Zallio is currently on Oahu as guest of the UH Myron B. Thompson School of Social Work (SSW) Center on Aging and the UH School of Architecture. He is a Fulbright Researcher at Stanford…
April 9, 2019, Kailua, Hawaii. Two years ago, Kathy O’Connor and I attended Mona Wood-Sword’s annual offering of the basics of Public Relations for non-profits. For Kathy and me, public relations is a skill that we needed to have if we were to succeed as an organization relying on community help to achieve our mission. We needed to get the word out there about ALSFH, along with a million other causes as deserving of attention as ours. We went…
24 March 2018, Kailua, HI. Under the leadership of Bonnie Delos Santos, a registered nurse who recently retired from Cedar Sinai Hospital in California, the St. John the Apostle and Evangelist Health Ministry Committee is in charge of organizing activities that motivate the Church membership to be health-conscious as part of Catholic Christian living. On Saturday, March 23, during the Committee’s monthly meeting, Divina Telan Robillard presented on ALS, the ALS Foundation of Hawaii, and Volunteer needs of the ALS…
10 March 2019, Kailua, HI. On Saturday, March 2, Ad Up Hawaii held its culminating activity for its 5th Annual Ad Up Hawaii competition at Impact Hub. Every year, Ad Up – a non-profit which describes itself as an “an off-shoot of Kokua.org whose core mission has been bringing people together to support one another” – seeks to help other non-profits with their marketing concerns by providing a small grant award plus professional assistance with creating and implementing their marketing…