News

Brian Burke, Katherine’s Li’l Brother, Dies at 61

Brian Burke’s life story was not always a sad one.  He was born the youngest of five children to Cecilia and Darrell Burke.  Like any health boy, Brian grew up with his family, which included Big Sis Katherine, in Benton Harbor, Michigan.  Early life was the usual – elementary, high school, an Associate degree in college. He didn’t engage in any sport but football and basketball occupied his interest as a bed-bound spectator in the years he had ALS. Sometime before 2002, when…

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MAHALO, St. John Apostle and Evangelist Parish, for ALSFH Display Corner

July 23, 2019, Kailua, Hawaii. Last Saturday, July 20, 2019, The St. John Apostle and Evangelist (SJAE) Parish in Mililani staged its first ever Health and Well-being Fair at the Kipapa Park grounds. The fair was organized by the parish’s Health Ministry Committee, ably led by retired nurse Bonnie delos Santos. After the invocation and warmup Tai Chi exercises led by a community volunteer, Wini Fronda of Humana and parishioner Steven Santiago led the walk around the park perimeter. It…

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Mahalo to Pacific Business News for Featuring ALSFH in July Signature Event

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…

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“With Grace” Run/Walk/Roll Energizes!

           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…

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The Queen’s Medical Center Social Workers Learn About ALS Care

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…

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A Well-attended Governor Ige Proclamation!

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,…

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Mayor Caldwell Proclamation: First ALS Awareness Month Event on Oahu

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…

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Dr. Matteo Zallio: “ALS Residence should make resident feel he is outside even when indoors.”

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…

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ALS Community Prepares for “May as ALS Awareness and ALS Families Appreciation Month”

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…

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Mona Wood-Sword: PR for Non-profits

  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…

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