Amyotrophic Lateral Sclerosis Association

A World without ALS

aka The ALS Association, MN/ND/SD Chapter   |   St. Paul, MN   |  www.alsmn.org

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.

Ruling year info

1990

Executive Director

Jennifer Hjelle

Main address

1919 University Ave W Ste 175

St. Paul, MN 55104 USA

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EIN

41-1756085

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Approximately 450 individuals in our region (MN/ND/SD) are living with Amyotrophic Lateral Sclerosis (ALS) at any one time. Also known as Lou Gehrig's Disease, ALS is a degenerative disease of the central nervous system, characterized by the death of the motor neurons. The disease causes gradual, progressive weakness and wasting away of voluntary muscles, affecting breathing, swallowing and speaking while often leading to total paralysis. Individuals with ALS typically lose their battle with the disease within 3-5 years of diagnosis. The financial and emotional toll placed on families throughout the progression of the disease is significant.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Durable Medical Equipment Loan Pool

The ALS Association, MN/ND/SD Chapter and University of MN/Fairview have partnered to provide new and used durable medical equipment for persons with ALS living in the Chapter's service area. Our equipment is housed at several sites throughout our service area and is loaned at no charge to persons with ALS.

Population(s) Served

We understand living with ALS makes daily tasks more challenging. In order to make life a little easier we created the family assistance program. Through this program we match trained volunteers with families affected by ALS to assist with tasks or to be a friendly visitor.

Population(s) Served

The Hrbek-Sing Communication and Assistive Device Program is available to any person living with ALS in the Chapter's service area and registered with the Chapter. The program provides augmentative communication equipment to individuals who have lost their ability to verbally communicate. The program also helps people with ALS maintain their independence by providing computer access equipment and/or environmental control devices.

Population(s) Served

A program for family caregivers.

Population(s) Served

The ALS Association, MN/ND/SD sponsors several support groups within our service area. Support groups offer people with ALS and their loved ones a place to receive education and support.

Population(s) Served

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

Mission Priorities:

Provide every person with ALS, in the areas that we serve, and their families access to high quality, consistent and compassionate support services
Operate a sustainably growing business model with diversified revenue designed to ensure stability and promote financial strength
Maximize awareness and advocacy to drive increased funding for ALS research focused on understanding the disease, developing treatments and ultimately finding a cure
Leverage improved use of technology to enhance care services, development, awareness and advocacy

All of the Chapter's programs and services are free to individuals living with ALS registered with our organization. Our four core programs include the Durable Medical Equipment Loan Pool, the Hrbek-Sing Communication and Assistive Device Program, the Jack Norton Family Respite Program, and the Occupational Therapy/Physical Therapy Program. We also offer support groups, a volunteer program, media library, national and state advocacy, consultation and support, in addition to continued contributions toward global research activities. The Chapter's Care Services team provides in-person, telephone and e-mail consultation with ongoing education regarding the support and resources available to people living with ALS and their families.

Our organization meets an unmet need in the community as there is no other organization that provides the level of comprehensive programs and services to people living with ALS and their families as we do. In addition, we support the ALS community in areas where other levels of support do not. For example, our Durable Medical Equipment Loan Pool provides new and used medical equipment to people living with ALS to help them maintain their independence and physical safety. Similarly, our Hrbek-Sing Communication and Assistive Device Program aids individuals who have lost their ability to verbally communicate by providing augmentative communication devices that are not covered by medical insurance. These programs are most often accessed when medical insurance will not cover these types of supports, ensuring that the needs of the population we serve have all they need in the fight against this disease.
Sustainability of our work, particularly from a funding standpoint, across our service area is a key focus of our organization. Currently, over 70% of organizational revenue is raised through special events, with individual and corporate giving also contributing. Within our events, we enjoy robust corporate and individual support. Overall, top corporate donors to our organization include Black Woods Group, Minnesota Twins, Kolar Autoworld, Polaris Industries, and C.H. Robinson Worldwide. Strengthening and leveraging these partnerships to boost revenue potential is a key area of concentration. Similarly, our work with individual donors allows up to expand a revenue structure that will drive sustainability. In addition to contributors who provide monetary support, we also enjoy in-kind partnerships that include housing of our equipment loan pools at their facilities and vendors who make the products people living with ALS use.

Our primary goal is to ensure that we are providing access to our programs and services to 100% of people in our service area that are living with ALS and their families. These programs and services are driven by the needs of those we are serving, so we do not establish metric targets in any particular area given the programs are most utilized depends on the individual needs and circumstances. Through the growth of our organization, we now have incorporated the goal of making sure there are no wait lists for our programs and services and we are able to deploy resources as soon as they are needed. Beyond this, our focus is on delivering the highest quality of experience possible in every interaction we have, both with the ALS community and all constituents. This is most directly measured by surveys we send to the individuals and families we work with, where we look to capture satisfaction levels with our organization and the care they have received. Last year, the following was accomplished by our chapter overall:

· Provided support to 595 individuals living with ALS in our service area through a variety of engagements.

· Secured respite care for 74 individuals and families.

· Connected 401 people to equipment in our Durable Medical Equipment Loan Pool.

· Engaged 46 people in support groups.

· Provided assistive communication devices to 246 people through our Hrbek-Sing Program.

Survey feedback was also positive, including the following comments from individuals and families:

· “I can only say that we are grateful for all you do and offer us. Thank you!"

· “Thank you for all you've done for us through your programs. We are so grateful for the equipment, the respite program, and volunteer program. It has been a great help through this journey."

· “There are no words to express the extreme gratitude and thanks for all you did for Greg and our family. Your sincere care, concern and help will be forever in our hearts."

Financials

Amyotrophic Lateral Sclerosis Association
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Operations

The people, governance practices, and partners that make the organization tick.

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Amyotrophic Lateral Sclerosis Association

Board of directors
as of 10/25/2019
SOURCE: Self-reported by organization
Board chair

Bill McCarthy