The 5th Annual “With Grace” Run/Walk/Roll went off with a bang at 8 am at Kailua Beach with a record 270 registrants making their way through Lanikai Loop. At the starting line, race coordinator, Julie Hess, stood on a cooler to thank the participants and reminded them what they were supporting – the race for a cure for ALS. After the short talk, husband Steve Hess, sounded off the horn to start the race. While…
May 11, 2019, Honolulu, Hawaii. “How to Help Families with ALS” was presented to members of The Queen’s Medical Center Social Work Department on Tuesday, May 7, at the Queen’s Conference Center. The hour-long PowerPoint presentation which I anchored, ably assisted by Ronaele and Katherine, both retired social workers, discussed the characteristics of ALS, implications for family care, and community resources available. It was richly enhanced by personal experiences from all three of us from our own journeys with ALS…
May 11, 2019, Honolulu, HI. A follow-up meeting following the short encounter with Lieutenant Governor (LG) Josh Green on Friday of the Governor Proclamation was intensely gratifying to those who were present: Shaun Brewer, an Army veteran with ALS; Brandi, his paid caregiver; Katherine O’Connor, ALSFH Treasurer, and I. In the hour-long meeting at the LG’S comfortable meeting room with a wall-long stunning view of downtown Honolulu, we discussed the different options for location and sponsorship for an ALS Hale…
May 11, 2019, Honolulu, Hawaii. Last Friday, May 3, a group of community supporters attended the Governor Ige Proclamation of May as ALS Awareness and ALS Families Appreciation Month. This was the biggest group thus far in the five years of celebrating May as ALS Month in Hawaii. For the first time, the Lieutenant Governor substituted for the governor who was not available that day. LG Josh Green is not new to ALS families concerns. ALSFH Board members Whittington, O’Connor,…
May 11, 2019, Honolulu, Hawaii. A small but dedicated group of ALS supporters skipped afternoon nap time to attend the 2:30 pm Mayor Caldwell Proclamation of “May as ALS Awareness and ALS Families Appreciation Month” at the Mayor’s Conference Room at Honolulu Hale. The simple ceremony was led by City Managing Director Roy Amemiya for the second time in as many years the Mayor Proclamation was held in Honolulu. After MD Amemiya received the lei from Ronaele, he asked the…
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…
Kailua, Hawaii. The ALS Community in Hawaii has a long history of being organized around a support group that started in 1998. Joyce Okahashi and I worked with Kathleen Hurtubise-Lin, then Muscular Dystrophy Association-Hawaii Executive Director, to set up the first ALS Support Group. From then, a number of support groups across the state has been organized by the ALS Association (ALSA). Kauai and the Big Island now have regular monthly support group meetings. On Oahu, support group meetings are…
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…