My Nonprofit Reviews

HOW MUCH VALUE IS PLACED ON HUMAN LIFE? Apparently, when a person is diagnosed with ALS, a terminal disease, their life becomes disposable as they are going to die. Some medical people think death is the solution rather than treatment. Well, my brother survived about twenty years living with ALS despite his many medical challenges. He was like the energizer bunny that just kept going. I feel he would still be alive with better care. He was content despite being on a ventilator, G-tube, being non verbal and a quadriplegic. He loved his tv routines, the unexpected, watching sports, flirting with the pretty female staff and daily visits from his sister. But nursing home care does not pay close enough attention to health details and things tend to fall through the cracks. That's why I am determined to create an ALS Residence in Hawaii for specialty ALS care to help prevent another needless death. Unfortunately, it was not in time for my brother. Brian passed away on July 9, 2019.
Please help to make an ALS Residence a reality.

15 years ago I found my youngest brother living homeless in the park. He had mobility issues and his speech was a bit slurred. We knew something was wrong but we did not know what. He was embarrassed to tell his family on the mainland but agreed to let me help him. Months later he was diagnosed with Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's Disease. He went to a care home and then a long term care facility. When he got pneumonia and needed to be trached and put on a ventilator he had to move to one of few skilled nursing facilities that provided respiratory care. Most skilled nursing facilities are geared for Alzheimers and dementia patients. ALS patients are totally mentally intact as the body declines and becomes paralyzed. With assistive technology and environmental adaptations in a "smart house", rather than being "warehoused", his life could have been so different. Watching his fate over the years I decided to become a super advocate of the ALS Residence Initiative and join forces with 3 others. We formed the ALS Foundation of Hawaii to create an ALS smart house residence on Oahu for our ALS patients to enhance their quality of life.