ALS awareness

“Lei of Remembrance” Memorial: A Fitting End to May, 2019 ALS Month-long Celebrations

Honolulu, Hawaii – It is an annual ritual – the fifth, this year – that our ALS community celebrates the Friday before the public’s Memorial Day. We bring out the signs that says, Mahalo, Hawaii!, to set the mood. Our state began celebrating “May as ALS Awareness and Families Appreciation Month,” with the Governor’s Proclamation in the Capitol, in City and County of Honolulu, and in other neighbor islands. We focused our attention into creating the social, educational, and political…

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Donate HA Miles to pALS Risati and wife Mona!

If you are here to donate Hawaiian Air miles to Risa’s cause: Click on this linkhttp://hawaiianair.custhelp.com/app/answers/detail/a_id/383/~/share-%2F-transfer-hawaiianmiles-between-accounts The account that the Fuimaono’s use is under MONALISA FUIMAONO, account number 303930184.  In that link, you will find the step-by-step instructions to share your miles.  On behalf of Mona and Risa, we thank you for your compassion. If you want to know WHY you should donate to the Fuimaono’s, please read on: Risati Fuimaono has lived with ALS (Amyotrophic Lateral Sclerosis or Lou…

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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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Follow-up Meeting with Lieutenant Governor Josh Green

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…

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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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Presenting to Parish Health Ministries

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…

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