Als Ohana of Hawaii

The three programmatic areas impacted include: expert care and consultation, including information sharing, referrals, training and support; equipment purchases and loans; and Als education and awareness. The organization provided essential services to Hawaii's Als community as Als Ohana (of Hawaii) subcontracted with another community partner serving Hawaii's Als community, the Als association golden west chapter. The partnership with the Als association golden west chapter ensured that Hawaii's Als community had access to a model of care proven to help people with Als live longer and better than any other known therapy. The chapter provided professional Als care management, local support groups, multidisciplinary clinical care, equipment loans, education and awareness events and opportunities to share formal feedback about program effectiveness. With grant support, services were provided throughout the state and at no cost to the Als community. In a state where expert care for diseases that are deemed "rare and with a disease that is highly variable, progressively degenerative and always fatal, access to this model of care is invaluable in Hawaii. From home visits and consultations via every possible mobile mode, to support groups where people living with the disease can directly connect with each other to accessing vital life sustaining and life-saving equipment and training to use that equipment, grant funding helped people with Als and their loved ones maintain health, safety, mobility, and well-being.