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Amateur Writers Convene for Book Project

August 8, 2018

ALS awareness, Fundraising Project, Meetings, News

August 7, 2018, Honolulu, Hawaii. A group of amateur writers started meeting with UH Professor Emeritus Virgie Chattergy to develop a book focusing on experiences living with ALS. As of this writing, group membership consists of Ronaele Whittington, Justin Hendrix, Rita Melville Alarcon, Catherine Sophian, Alexa-Rae Telan, and Divina Telan Robillard. Last year, the Filipino Association of University Women (FAUW) published an anthology of essays entitled, “Pinay: Culture Bearers of the Filipino Diaspora.” It was edited by Professor Chattergy and…

Forging Relationships with Hawaii Neuromuscular Alliance

July 31, 2018

Uncategorized

July 26, Camp Erdman, North Shore, Oahu. Hawaii Neuromuscular Alliance (HNA) picked up where MDA-Hawaii left off. MDA-H did not arrange for its annual summer camp for kids with neuromuscular disorders this year. A grassroots campaign led by Dr. Doug Miles, neurologist from Queen’s Medical Center, was able to organize one in time before the kids and volunteer counselors go back to school next month. Five campers and eight volunteer counselors plus four adult staff enjoyed five days of organized…

Waipahu High School Students Learn About ALS and Nursing Careers

July 19, 2018

ALS awareness, News

July 18, 2018. Waipahu, HI. Students in Dr. Ric Custodio’s “Survey of Health Professions” class at Waipahu High School learned how Divina Telan Robillard’s nursing background helped in providing care for her husband, Britt Robillard, PhD, when he was diagnosed with ALS in late 1984. Dr. Robillard lived decades beyond the average 3-5 year lifespan of pALS. He passed away in 2015, four years after retirement from his faculty position in the University of Hawaii Department of Sociology. Telan Robillard…

Board Advocates for Vets with ALS

July 11, 2018

Meetings, News

July 11, 2018, Honolulu. The ALSFH Board met this afternoon with US Senator Mazie Hirono’s Hawaii-based staffer, Carlos Santana, to share the Eden Alternative (EA) philosophy on which the ALS Residence model is based. Senator Hirono is a member of the Senate Veterans Affairs committee. Eden Alternative promotes growth and development throughout all stages of life. According to EA, the “three plagues of loneliness, helplessness, and boredom account for the bulk of suffering in a human community.” The ALSFH strongly advocates…

ALS Awareness and ALS Families Appreciation Month

April 30, 2018

Events

The Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease) community in Hawaii will celebrate May, 2018 as “ALS Awareness and ALS Families Appreciation Month”, beginning with a Proclamation from Governor David Ige at the State Capitol Ceremony Room on April 27, Friday at 10 am. Mayor Kirk Caldwell’s Proclamation for the City and County of Honolulu will be held on May 1, Tuesday at the Honolulu Hale, 2:30 pm. For the past three years, members of the ALS community have…