AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATIO EVERGREEN CHAPTER
19226 66th Avenue South L-105, Kent, WA 98032 www.alsa-ec.org

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Organizations Filed Purposes: Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's disease and their families to live fuller lives by providing them with compassionate care and support.

The ALS Association Evergreen Chapter has a service area of Washington, Idaho, Montana and Alaska. In 2020, a total of 920 patients were served across the region. To protect our families living with ALS and our staff from COVID-19, the chapter restricted the support groups to a virtual format. The Chapter offered 20 support groups throughout the month with many unique groups such as Living Alone with ALS, ALS Families with Kids, Mens ALS/PLS Chat, Life After ALS Grief Group, Assistive Technology, and two caregiver groups. Through these groups, the patient and caregivers can share tips that make living with the disease easier and support one another.To keep our patients safe during the pandemic, the Chapter briefly paused loaning durable medical equipment until deep cleaning and safe delivery protocols were in place. In total, 403 pieces of durable equipment loans were provided free of charge. 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. In 2020 we began building the infrastructure to effectively manage, track, and reserve items in our loan lockers. For the past seven years management of the loan lockers has been a continuous game of Go-Fish among the care coordinators, and Ill have to check to families and clinicians requesting equipment. This new working inventory system will streamline the time it takes for locating and reserving equipment, saving our care services staff time and getting items to our families more efficiently. 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 2020, care visits were held primarily virtually through phone and video calls. The care services team also instituted a daily virtual chat. For two hours on every weekday, the team hosts a daily chat to answer questions and connect patients and caregivers with local resources. Our Care Services staff provided 654 personal interactions. In addition, 146 patient meetings were held by the chapter's assistive technology manager 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 $500 grant can help with Respite Care, Home Health Services, ADA compliant home modifications, Accessible Transportation, or to pay living expenses. In 2020, the chapter awarded 46 grants to families in the amount of $22,000.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.

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