After an acute episode of pneumonia, Cheryl Kellett decided to leave the nursing home. She wanted to spend the last days of her life at home in the care of a hospice team. Her family supported her decision. Home is in Kalihi, where the loving family reconfigured their living room so Cheryl can look out into the street through the picture window and see who’s at the door. ALS is an isolating disease; situating the ill person in a place…
September 9, 2019, Kailua, HI. Foodland and Western Union Foundation in Hawaii started its annual “Give Aloha” Program on September 1st to continue the legacy of founder, Maurice “Sully” Sullivan of giving back to the community. Foodland gives more than $250,000 annually to non-profits that participate in the program. For the first time this year, ALSFH signed up to participate in the program. Katherine O’Connor, ASLFH Treasurer, constructed its sign out of recycled cardboard. “I spent less than $2 on…
August 29, 2018. Honolulu, HI. Close to 50 friends and family celebrated Katherine O’Connor’s and Divina Telan Robillard’s August birthdays at Romano’s Macaroni Grill at Ala Moana Shopping Center. The group was encouraged to participate due to RMG’s pledge to donate 20% of the bill upon presentation of an approved flier for either dine-in or take-out. Dr. Richard and Janet Post, college friends of the late Professor Britt Robillard, have pledged to match RMG’s donation, dollar for dollar. Dr. Post…
August 25, 2018, Kailua, Hawaii. Board of Director members, Katherine O’Connor and Divina Telan Robillard are celebrating their birthdays this month. Katherine’s birthday is August 26 and Divina, the 29th. To celebrate their birth month, both BOD members created fundraisers on Facebook. Divina’s Facebook fundraiser goal of $1000 was surpassed within 48 hours. Eighteen FB friends donated directly to the fundraiser which continues for one more week. Katherine also has a FB fundraiser continuing for another week. The total…
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…
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…
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…
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…
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…