Impact Report 2020 FINAL

ALSA.EC

Impact Report 2020

ALS Didn’t Stop in 2020 and Neither Did We!

We all deserve a t-shirt with the tagline: “We Survived 2020!”

Through the generosity of donors like you, the ALS Association Evergreen Chapter did not only

survive last year but figured out a way to deliver services and programs to ease the crushing

burden of this devastating disease.

We had moments when it seemed impossible to serve our community while protecting people

with ALS and chapter staff from COVID infection. In March 2020, we changed how we offered

services to people with ALS and their families by moving all in-person care visits and support

groups to Zoom meetings. Our care services team instituted a daily virtual chat for PALS and

families to answer questions and connect them with local resources. The virtual format allows

our families not only the safety, but the ease of attending a group without travel and allows

people to attend groups from remote areas.

At the direction of our strong ALS clinics, we supported PALS and families as they ventured

into the land of telehealth. Our care service coordinators were flexible and responsive to this

sudden switch and we continued to have representation at most of the clinics last year.

We had to suspend our equipment loan program briefly until we learned more about the virus.

We eventually established new equipment-cleaning protocols and contactless-delivery dropoff

procedures. We also began building the infrastructure to effectively manage, track, and

reserve items in our loan lockers. This system will streamline the time it takes to locate and

reserve equipment, saving our staff time and getting items to our families more efficiently.

You’ll read in this report how we maintained services last year and are looking to add new

programs in 2021, like our Family Assistance Program which can increase quality of life for the

person living with ALS, and decrease stress, and make life easier for the whole family. Volunteers

will be trained and matched with families to assist with household tasks, relieving the

burden on caregivers and providing companionship to our PALS.

Inside this issue

What is ALS…………….2

The Impact of Your

Support…………………..3

Achievements 2020...3

Our Services………...5-7

Upcoming Events…….8

Contact Us……………...8

Thank you for staying engaged with us during the past year. We look forward to a more stable

and brighter 2021!

Pauline Proulx, Executive Director


2


2020 BY THE NUMBERS: THE IMPACT OF YOUR SUPPORT

Thanks to your generous support, all programs and services provided in 2019 were also provided in 2020. Some

programs temporarily transitioned to a virtual platform in order to ensure the safety of our community and to

eliminate concerns of Covid-19 exposure.

Our Mission: To discover treatments and a cure for

ALS, and to serve, advocate for, and empower people

affected by ALS to live their lives to the fullest.

3


Mission Impact & Achievements 2020

OUR MISSION

To discover treatments and a cure for ALS, and to serve, advocate for, and empower people

affected by ALS to live their lives to the fullest.

The ALS Association Evergreen Chapter has a service area of Washington, Idaho, Montana, and

Alaska. In 2020, a total of 925 patients were served across the region.

State Population ALS Incidence ALS Prevalence Patients Served % Patients

Served

Washington 7,614,893 152 609 694 114%

Alaska 731,545 15 59 34 58%

Montana 1,068,778 21 86 67 78%

Idaho 1,787,065 36 143 130 91%

Population based on US Census & State estimates 2018

Incidence & Prevalence: per ALSA Talking Points 2/100,000 & 8/100,000

Incidence = newly diagnosed per year

Prevalence = number of patients living with ALS

Percent of patients served against prevalence

Data based on patients served in 2020 (925 total)

The Board of the Evergreen Chapter met 7 times in 2020. Along with providing guidance and governance

to the organization, they oversee the budgeting and monitor the finances. This ensures

that each dollar is used wisely and to move the mission forward.

For fiscal year ending 1/31/21 the Evergreen Chapter had a total revenue of $2,192,405 and a

total expense of $2,026,373. Net assets were $896,576.

Board Officers:

Jean Gronewald, President

David Foucault, Vice President

Dominique Barr, Secretary

Karena Schneider, Treasurer

Board Members:

Valerie Barrs-O’Mara

Priscilla Bell

Russ DeVore

Cori Enghusen

Ryan French

Dr. Ileana Howard

Dr. Erik Schroeder

Susan Shay

Paul Tuss

4


OUR SERVICES

Care Visits

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 individual’s specific needs and the

wide variety of chapter and community resources available to make each adjustment

easier.

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 weekdays, the team

hosts a daily chat with PALS and families to answer questions and connect them with

local resources.

Support Groups

Support Groups provide an opportunity to be with other people who are living with ALS

and/or their loved ones. The disease varies in the way it progresses, as does the way

people cope with the disease, but some find that a community to express shared challenges

is helpful.

The Chapter is currently offering over 20 on-line support groups throughout the month

with many unique groups such as Living Alone with ALS, ALS Families with Kids, Men’s

ALS/PLS Chat, Life After ALS Grief Group, Assistive Technology, and two Caregiver

groups.

"The ALS Support group has been a big help. My daughter was diagnosed

two years ago. I'm lucky to still be able to talk to her. I encourage her to

find the joy of each day." - Lorna W., support group member

5

Durable Medical Equipment Loans

People with ALS need extensive durable medical equipment (DME) during their illness.

Our equipment loan closets contain primarily used and donated equipment,

from bed rails to bath benches to power wheelchairs. Care Coordinators offer these

free of charge to provide the best possible quality of life. The Evergreen Chapter

currently has eight loan closets covering our expansive territory.

In 2020, we began building the infrastructure to effectively manage, track, and reserve

items in our loan closets. Our new inventory control system is going to streamline

the time it takes for locating and reserving equipment, saving our care services

staff time and getting items to our families more efficiently.

Assistive Technology Support

Most people with ALS will experience difficulty with speech and movement as the illness

progresses. The Evergreen Chapter provides assistive technology equipment

through our loan closets. Our loan closets include a wide array of low tech to high tech

equipment, such as eye gaze communication devices. All equipment is subject to availability

within our loan closet. Our Assistive Technology Manager provides the support

needed for people with ALS to live more engaged lives, through the use of technology.

In 2020, our assistive technology manager held more than 146 assistive technology

consultations. 25 eye-tracking devices and 25 speech generating devices were delivered;

all accompanied by training, customization, and troubleshooting. Voice banking

support was provided to 17 individuals. Our new assistive technology support group

had 65 participants throughout the year.


Quality of Life Grants

Initiated by our Care Coordinators, the Evergreen Chapter 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 help pay general living expenses.

In 2020, we awarded 46 grants to families in the amount of $22,000.

Family Assistance Program

We are excited to announce the addition of our Family Assistance Program in 2021. The major goal of this program is to

increase quality of life for the person living with ALS, decrease stress, and make life easier for the whole family. By accessing

volunteer services, we believe all members living in the household will experience benefits from this program. The

Family Assistance Program will relieve the burden of daily tasks allowing the family to spend time on enjoyable activities.

Volunteers are an essential part of The ALS Association Evergreen Chapter’s vision and values. They will be carefully

matched and trained to support the needs of each family. Volunteers can assist with most household tasks, except for

personal care, medical care, and transportation. Common requests include meal preparation, laundry, yard work, errands,

voice banking, and pet care. Not only do people living with ALS get help, but the volunteers, many of whom have been

personally affected by this disease, are able to give back in a meaningful way.

The Family Assistance Program will be one of our most rewarding services. To get connected email Katrina Hawking

at katrina@alsa-ec.org or call the main office at 425-656-1650.

6


ALS Clinics

The ALS Association Centers have full multidisciplinary teams

of ALS specialists at the clinic who work collaboratively with

the patient and their family. The ALS Association Centers are

designed to provide a regular, thorough, and interdisciplinary

evaluation; answer questions; and find potential solutions to

problems. Typically, a clinic visit involves a full morning or

afternoon and occurs every three months. The Evergreen

Chapter has teamed up with some of the best physicians and

clinics in the area we serve to ensure that people living with

ALS have access to state-of-the-art care.

Clinic Locations

ALS ASSOCIATION CERTIFIED CENTERS OF EXCELLENCE

Virginia Mason Neuroscience Institute

1100 Ninth Ave., Seattle, WA 98101

MEDICAL DIRECTOR: Xuan Wu, MD, PhD

PHONE: 206-341-1900

Swedish Neuroscience Institute

500 17th Ave., Suite 400, Seattle, WA 98122

MEDICAL DIRECTOR: Michael Elliott, MD

PHONE: 206-320-3494

VA Puget Sound Health Care System

1660 S Columbian Way, S-RCS-117, Seattle, WA 98108

MEDICAL DIRECTOR: Ileana Howard, MD & Maxwell Ma, MD

PHONE: 206-716-5756

VA Puget Sound Health Care System

9600 Veterans Drive SW; A-117-RCS, Tacoma, WA 98493

MEDICAL DIRECTORS: Ileana Howard, MD

PHONE: 253-583-1646

AFFILIATED CLINICS

UW Neurology Clinic

1959 NE Pacific St., Seattle, WA 98195

MEDICAL DIRECTOR: Michael Weiss, MD

PHONE: 206-598-7688

Kaiser Permanente Neuro Clinic — Capitol Hill

125 16th Ave E CSB-3, Seattle, WA 98112

MEDICAL DIRECTOR: Edward Tay, MD

PHONE: 253-596-3410

Kaiser Permanente ALS Clinic — Tacoma

9505 Steele St S., Tacoma, WA 98444

MEDICAL DIRECTOR: Edward Tay, MD

PHONE: 253-596-3410

Kadlec ALS Clinic

1268 Lee Blvd., Richland, WA 99352

MEDICAL DIRECTOR: Hui-Juan Zhang, MD

PHONE: 509-942-5560

St. Luke’s ALS Center

711 S. Cowley St. , Spokane, WA 99202

MEDICAL DIRECTOR: John Chapin, MD

PHONE: 509-473-6000

Les Bois Neurology

3875 E Overland Road, Meridian, ID 83642

MEDICAL DIRECTOR: Heidi Orme, MD

PHONE: 208-343-6200

St. Alphonsus Neurology ALS Clinic

901 N. Curtis Rd #501, Boise, ID 83706

MEDICAL DIRECTOR: Jackie Whitesell, MD

PHONE: 208-367-7827

Boise VA Medical Center ALS Clinic

500 W. Fort St., Boise, ID 83702

MEDICAL DIRECTOR: Paula Carvalho, MD

PHONE: 208-422-1000

Billings Clinic

801 N 29th St., Billings, MT 59101

MEDICAL PROVIDER: Steven Arbogast, M.D.

PHONE: 406-238-2500

7


2021 EVENTS

Spring Walks to Defeat ALS 4/24/21

Silver Linings Gala 5/22/21

Evergreen Ride to Defeat ALS 6/19/21

Wine Event—AUGUST

Fall Walks to Defeat ALS 9/25/21

Seattle Walk to Defeat ALS 9/25/21

Boise Walk to Defeat ALS 9/25/21

Missoula/Billings Walk to Defeat ALS 9/25/21

Tacoma Walk to Defeat ALS 9/25/21

Tri-cities Walk to Defeat ALS 9/25/21

Create your own event

—any time of year!

There are so many unknowns as we navigate

our way through health guidelines in

2021, but you can still make a difference!

Join us in our mission to discover treatments

and a cure for ALS, and to serve, advocate

for, and empower people affected

by ALS to live their lives to the fullest. With

your help we can make a bigger impact in

the communities we serve-Washington,

Idaho, Montana, and Alaska. Reach out to

us at info@alsa-ec.org or 425-656-1650 and

we will help you put your plan into action!

Contact us:

Mailing Address:

19226 66th Avenue S. #L-105

Kent, WA 98032

Phone: 866-STOP-ALS or

425-656-1650

E-mail: info@alsa-ec.org

EIN: 91-1950869

PLEASE

PLACE

STAMP

HERE

Follow us:

facebook.com/ALSAEVERGREEN

Instagram.com/alsaec

Twitter.com/ALSA_EC

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