Amyotrophic Lateral Sclerosis of Michigan Inc.

Hope ~ Help ~ Here for You

aka ALS of Michigan, Inc.   |   Southfield, MI   |  http://www.alsofmichigan.org

Mission

ALS of Michigan is dedicated to helping people with ALS (pALS), their families and caregivers live life as fully as possible. We also support research into the cause, treatment, and cure of ALS.

Services are provided throughout Michigan.

Notes from the nonprofit

The success of our organization can be seen through our service statistics. We may be small in size, e.g. staff, but we are mighty in performance. Our Board and our staff live by our mission statement, specifically, to make "living" with ALS easier. All of our programs and services a geared to meet that mission. Our success speaks to our dedication.

Ruling year info

2005

Executive Director

Ms. Susan Burstein-Kahn

Main address

24359 Northwestern Hwy., Suite 100

Southfield, MI 48075 USA

Show more contact info

EIN

38-2190726

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

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

Nerve, Muscle and Bone Diseases (G50)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

ALS of Michigan is dedicated to helping people with ALS (pALS) to live life as fully as possible. ALS robs a person of their ability to move, speak, and eventually breathe. Because of the insidious nature of this disease, ALS of Michigan's programs focus on living everyday with Lou Gehrig's Disease. To that end, we provide services that enhance daily living, which is severely compromised by the diagnosis of ALS. ALS affects not only the pALS but the entire family. In most cases a spouse, child, or parent will become the primary caregiver, caring for their loved one 24 hours a day, seven days a week, as their loved one's (pALS) body fails. That is why so much support for caregiving is needed. Additionally, about 80% of all pALS will lose their ability to speak, necessitating alternative methods of communication.

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?

AAC (augmentative & Alternative Communication) Center

Approximately 80 - 85% of pALS will lose their ability to speak and the muscles of the tongue and throat are affected by ALS. At our AAC Center pALS can be evaluated and trained for the appropriate speech equipment to keep them connected to their loved ones and their community.  From low tech alphabet or Boogie boards, to the high tech eyegaze systems, our Speech Pathologist matches the best equipment to the pALS.  We also have an extensive loan closet of speech devices.

Population(s) Served

ALS of Michigan boasts a fully stocked loan closet comprised of item including: wheelchairs (both power and manual); walkers; ramps; lifts; commodes; shower chairs; speech devices; and much more. All items are loaned free of charge for as long as needed.

Population(s) Served

ALS of Michigan hosts 5 support groups around the State of Michigan. Support groups are a way for pALS and their families to interact with others who are living with ALS.

Population(s) Served

Respite care allows the caregiver to take some much needed time away from the 24 hour 7 day a week labor of love caring for someone with ALS.

ALS of Michigan provides up to 12 hours a month of respite care provided by a local home health company chosen by the pALS and their family.

Population(s) Served

ALS of Michigan holds several workshops and seminars of interest to pALS and their families every year. These include a Research Update, Augmentative Communication for pALS, Eyegaze Seminar, and Information Connection, just to name a few.

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of families who receive respite care in their home

This metric is no longer tracked.
Totals By Year
Related Program

Respite Care Assistance

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

ALS of Michigan's Respite Care Assistance Program pays for 12 -13 hours per month of home health care for pALS and families.

Number of free participants in conferences

This metric is no longer tracked.
Totals By Year
Related Program

Workshops and Seminars

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

ALS of Michigan hosts seven (7) support groups around Michigan along with a complement of seminars and workshops over the years on topics of interest to pALS and their families.

Number of items that are loaned to or purchased for pALS

This metric is no longer tracked.
Totals By Year
Related Program

Equipment Loan Closet

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our Equipment Loan Closet boasts over 700 items that are loaned at no charge for as long as needed. These numbers represent the number of loaned items during the year. Many items are shipped directly

Number of pALS who are evaluated for and trained on Augmentative and Alternative Speech Devices.

This metric is no longer tracked.
Totals By Year
Related Program

AAC (augmentative & Alternative Communication) Center

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

The majority of pALS lose their ability to speak. Augmentative and Alternative communication keeps them connected to those around them. This reflects the # of pALS who have received speech services.

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 goal is to make living with ALS easier for all pALS and their families living in Michigan. We look to accomplish this through increasing our revenue, and thereby, increasing our level of services. For example, with additional proceeds from the 2014 Ice Bucket Challenge and additional revenues in 2015 and 2016 along with our successful fundraising events, we have been able to increase the number of families served by our Respite Care Assistance Program to 75 every month, purchase new and additional items for our Equipment Loan Closet, supply our AAC Center with much needed items, drop ship smaller disposal items like commondes, shower chairs, transport wheelchairs, and more directly to our pALS anywhere in Michigan.

All of this makes living with ALS easier for our pALS and families, which is our ultimate goal..

Work to acquire and maintain new and additional donors to support our programs.

We also survey our ALS community to determine what new, additional, or expanded programs and services they see as being the most valuable to them.

Our staff consists of three (3) Master level social work professionals who are able to assist our community in navigating the confusing world of insurance, resources, and medical care. They are also able to help with the psycho social issues that many of our pALS and their families experience.

We also employ a Speech and Language pathologist who specializes in Augmentative and Alternative Communication for our pALS who have lost their ability to speak.

We have many volunteers who fill in those areas (secretarial, event, etc.) that have great need, and therefore save us valuable dollars that can be directed to direct programs services.

Over the years, ALS of Michigan has been extremely successful in providing critically needed services to Michigan's ALS community. Some are the only service of their kind available to people with ALS. Currently, we have 100 families on respite care - we are evaluating pALS for speech devices every week, our support groups are well attended as are our seminars and conferences. Our Equipment Loan Closet is in regular use, with items being loaned out (or purchased) every day of the week, ans we have a constant stream of pALS and families visiting our office as they seek help with personal, speech, and equipment needs. All of these contribute to meeting our mission of helping our pALS and their families live life as fully as possible.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To make fundamental changes to our programs and/or operations

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

Financials

Amyotrophic Lateral Sclerosis of Michigan Inc.
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Amyotrophic Lateral Sclerosis of Michigan Inc.

Board of directors
as of 02/26/2021
SOURCE: Self-reported by organization
Board chair

Dori Ranck

Eva Freed

Jay Welford

Andrew "Rocky" Raczkowski

Mark Smith

Linda Novak

Lisa Alteri

Jack Cherney

Dori Ranck

Andy Roisman

Theresa Spranger

VINCE MACCANI

Kevin Sherry

ALLISON SHERRY

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 10/14/2020
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Gender identity
Female

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data