Amyotrophic Lateral Sclerosis Associatio Evergreen Chapter

The ALS Association Evergreen Chapter has a service area of Washington, Idaho, Montana and Alaska. In 2021, a total of 712 patients were served across the region. To continue to protect our families living with ALS and our staff from COVID-19, the chapter restricted the support groups to a virtual format in 2021. The Chapter offers more than 20 support groups each month, including Living Alone with ALS, ALS Families with Kids, Mens ALS/PLS Chat, Life After ALS Grief Group, Assistive Technology, and two caregiver groups. Attendance at these monthly meetings varied from 2-20 participants. Through these groups, the patient and caregivers can share tips that make living with the disease easier and support one another.514 durable equipment loans were provided free of charge. To keep our patients safe during the pandemic, the Chapter expanded its deep cleaning and safety protocols for the equipment. ALS is a progressively disabling disease which means an ever-increasing need for medical equipment that insurance companies may not cover. Our free equipment loans become a lifeline for patients. Care Services Coordinators provide support, information, and referrals during in-home visits with ALS patients and their families to help them cope with the day-to-day challenges of living with ALS. These visits focus on each individuals specific needs and the wide variety of chapter and community resources available. In 2021, care visits were held both in-person and virtually, through phone and video calls. Our Care Services staff provided 715 personal interactions. In addition, 183 patient meetings were held by the chapter's assistive technology managers to provide personalized technology support.The Evergreen Chapter Quality of Life Grant provides direct support intended to make life a little bit easier for patients and their families. The grant can help with Respite Care, Home Health Services, ADA compliant home modifications, Accessible Transportation, or to pay living expenses. In 2021, the chapter awarded 51 $500 grants to families totaling $26,000. ALS has no cure, and only two drugs are approved by the FDA to treat the disease. They have side effects, are very expensive and while proven effective for some, have a very modest impact on the disease, at best improving life expectancy by 30%. ALS has twice the incidence in the Military as the general population and is now (after extensive advocacy efforts by patients) considered a service-related disease. Funding for ALS research is now being conducted by the Department of Defense, and every year patients advocate to make sure this funding does not get cut from the budget. Similarly, an ALS National Registry of patients is collecting data on possible exposures to toxins throughout their lives due to occupational hazards, where they lived, etc. A bio registry, connected to the ALS National Registry, collect tissue samples along with biographical information. This data is offered to scientists to assist in finding clues to the cause and to hunt for a cure for ALS.