Amyotrophic Lateral Sclerosis Association

aka ALS Association St. Louis Regional Chapter   |   St. Louis, MO   |  http://webstl.alsa.org/site/PageServer?pagename=STL_homepage

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

Notes from the nonprofit

In the summer of 2014, millions of people took part in the largest viral social media movement the world has ever seen – the ALS ice bucket challenge. Their involvement provided hope to thousands suffering from ALS – and their donations have made a tremendous difference in the lives of people fighting this cruel disease.

Thanks to the generosity of our community, we are now able to put these funds to work in helping people with ALS and their families live a higher quality of life while we search for treatments and a cure. Not only have we been able to increase funding for our Certified Center of Excellence at Saint Louis University -- one of only 43 in the country – but plans are underway to partner with two new clinics that serve our nation's veterans, a group who is twice as likely to get ALS as the general public.

This generosity has had an immediate impact on people with ALS in our area.

How much money did your charity raise via the #Ice Bucket Challenge? $344,000
What are your charity's plans for spending that money?
IBC $ is being reinvested in our 3 core service areas over a 3 year period: • 55% in Local Patient Care Services, • 16% in ALS Research • 19 % in Advocacy /Education and Outreach • 10% in support for capacity building for fund development and communications. We are reinvesting and will more than double the financial support to one ALS Certified Treatment Center and 4 other ALS Clinics in our service area which includes 2 new VA clinics in 2015. We have already extended respite care grants, home modification grants, purchased equipment for our loan closet and we will be able to increase support for the next 2 years in assistance to individuals with ALS. So far the national ALS organization has reinvested close to $77Million in additional research projects and our chapter will be reserving 16% of our IBC $ to reinvest in local and national projects as well. We increased the number of advocates that traveled to DC with us for the Public Policy Conference and Advocacy day on Capitol Hill as well as increasing the amount of local state advocacy activities. We will also be increasing the amount of communications and outreach in order to educate others about our chapter's programs and fundraising activities in order to engage more individuals to support our mission. 10% of the IBC $ will be used for fundraising and communications capacity building and professional development. This will allow us to grow and increase number of donors and amount of dollars raised . This will allow us to develop strategies for communicating to target audiences; storytelling, and campaign planning and marketing the right audience for the right activities using the right types of media. Support and training will also increase capacity of staff and board for fundraising activities which will further sustain the organization.

Ruling year info

1990

CEO

Ms. Katie McGovern

Main address

1950 Craig Rd Suite 200

St. Louis, MO 63146 USA

Show more contact info

EIN

43-1458163

NTEE code info

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

Neurology, Neuroscience (H96)

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

We will do whatever it takes to: Ensure people with ALS have access to effective treatments, and cases of ALS are being prevented Empower people with ALS to engage with the world in the way they want Reduce the physical, emotional, and financial burden of living with ALS Ensure ALL people with ALS and their caregivers receive high quality services that benefit them Create a culture of accountability to ensure meaningful impacts for people with ALS

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?

Patient Assistance Services

All services are provided in conjunction with the multidisciplinary health professionals at Certified Health Centers and/or Recognized Treatment Centers with the goals of decreasing financial strain, maximizing functional independence, and improving quality of life. Each family works one on one with a social work professional to provide case management and disease education. Services offered are: in home medical respite care, home accessibility modification grants, nutritional supplement assistance, clinic transportation assistance, durable medical equipment loan closet, assistive technology and speech generating device loan closet, grants for physical, occupational, and speech therapy, ALS specific medication support, counseling for patient and caregivers along with children.

Population(s) Served
Adults

The chapters provides volunteers in the homes of ALS patients to perform non medical support.
The chapter also implements a web based national program to help harness patients out of home support network.
The chapter also works with community businesses and organizations to offer one time project days

Population(s) Served
Adults

The chapter completes a nationally driven federal campaign for research and patient's rights. It also coordinates a state level campaign for patient's rights. The Chapter host an educational institute that provides educational seminars and outreach to healthcare professionals.

Population(s) Served
Adults

Where we work

Affiliations & memberships

Community Health Charities 2012

Association of Fundraising Professionals - Member 2012

Chamber of Commerce 2012

United Way Member Agency 2012

United Way Safety Net Member 2020

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 clients served

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Patient Assistance Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Case management contacts

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Patient Assistance Services

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of Nutritional Supplements Provided to ALS Patients

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Patient Assistance Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of pieces of durable medical equipment used from loan closet

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Patient Assistance Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of those receiving ALS clinic support

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Patient Assistance Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of Patient/Family Home Visits

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

Patient Assistance Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

What is your organization aiming to accomplish? Provide quality services to people living with ALS and their families; Provide community education and stimulate public awareness through advocacy; raise funds for local care services and for national research. All to improve quality of life and decrease emotional and financial stress while battling a fatal disease.

Our strategic priorities are: Providing every person with ALS and family access to high quality, consistent and compassionate support services at no cost; Advancing local and nationwide advocacy program to improve quality of life and empower the ALS community; Raise the level of awareness by increasing outreach, communications and community action; ensure continued growth and future strength and leadership by having a diverse, resourceful and engaged board of directors; Have a good business model and philanthropic culture that will ensure chapter sustainability.

We have the infrastructure in place in regards to our staffing model to effectively deliver programs and services and have 100% board involvement working with fund development staff and CEO. Our communications department works to ensure we are reaching the right audiences and that messaging is consistent on how we tell our story and market our services and fundraising efforts.

We track progress on our strategic goals by having specific outcome indicators and measure progress with dashboard reporting for staff and the board.

We have exceeded revenue goals for the past 10 years. The board has increased participation, is engaged in strategic work and fundraising. We have increased awareness and continue to increase face book and twitter fans and followers. We have a succession plan in place for board and staff. We have increased the number of clinic partners and the amount of patients treated at our ALS clinics.

Things not yet accomplished: With the pandemic we have less engagement / participation and fundraising in our new virtual event platform. Events moving forward is still a difficult planning process not knowing if we can hold in person Chapter events; Grant revenue and individual contributions was down this year also due to the pandemic; Meeting patient needs and coordaining care with ALS clincs has also been a new way of doing care and support in a virtual platform and we continue to learn new ways to keep close contact with those we serve, even though home visits have been eliminated due to the pandemic; we have 4 open board seats and we are in need of diversifying our board; we continue to have an unmet need from patients, more than what resources we can give, so we are consistently fundraising to meet more of that critical need.

Programs and Services - Regularly assess efficacy of certified center and ALS specific clinics and our service utilization; Increase number of patients treated at our ALS clinic and increase medical referrals; develop a methodology for cost of care.
Advocacy - active chapter public policy committee; Identify ALS champions for state of MO and IL; Initiate local legislative outreach and public policy activities
Community Awareness - Increase visibility throughout our entire service area; establish meaningful connections / relationships with prospective volunteers, and donors; Cultivate long term relationships with existing families, institutional partners and donors
Governance - Advance board recruitment plan assessing and filling gaps with diversity in mind; Advance succession plan; Increase level of commitment and compliance in board participation requirements; address board development and education needs; ensure strategic direction is aligned with mission and long range plan and that there are measures for success
Finances - have a well diversified revenue stream; further non-event revenue initiatives; refine and fully implement major gift program; identify new grant sources; track retention of donors; involve all board members in some aspect of major gift plan and/or other fundraising and stewardship activities.

We have the infrastructure to allow patients and families their own case manager who provides home (VIRTUAL)visits and a care services team that works in collaboration with community partners to ensure each patient registered is receiving the beast care and support. We are dedicated to evaluation of programs to ensure that we evaluate the outcomes and are providing based on need. Our board of directors are engaged in planning and assessment and involved in fundraising and identifying opportunities. The board works effectively with the CEO driving the mission, addressing challenges and serving as ambassadors for the organization. We have a seasoned development staff who works closely with the CEO and the board to reach fundraising goals. Our communications dept of one works to ensure our messaging is consistent and that we are telling our story. He also assists all staff and board in marketing our services and our fundraising and public policy activities.

It takes $2 billion dollars to develop and get one good drug to market. There are two new treatments for ALS which is exciting for the ALS community. Much more is needed for funding our ALS Research Program. We have established a new grant program for people with ALS and their families called Jane's Angel fund which covers additional expense not covered by insurance and we have been able to increase respite funding due to receiving a Missouri state grant for respite care. With a successful succession plan we have a new President and CEO (previous Development Director) that will start this position after careful transition on Feb 12, 2021. She is also succeeded in the development Director position by our development manager who has started her new position Feb 2, 2021. We are embarking on a new long range strategic plan and will begin to outline strategic priorities and objectives this year in 2021.

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 collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Case management notes, Community meetings/Town halls,

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

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, assessing utlization of services that they qualify for,

  • What significant change resulted from feedback?

    support groups are now provided based on feedback of those we serve wanting this type of support service

  • With whom is the organization sharing feedback?

    Our staff, Our board, Our funders, Our community partners,

  • What challenges does the organization face when collecting feedback?

    difficult to collect data in a timely matter from clinical partners due to the pandemic shut downs,

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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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

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Amyotrophic Lateral Sclerosis Association

Board of directors
as of 2/12/2021
SOURCE: Self-reported by organization
Board co-chair

Mr. Josh Rogers

Fleishmann Hillard

Term: 2012 -


Board co-chair

Mr. Mike Sabatino

Fleishman Hillard

Term: 2017 -

Dave Van de Riet

Josh Rogers

Zach Leeds

Scott Wanamaker

Beth Barrett

David Busker

Dave Collet

Kevin Hemenway

Evan Waldman

Michael Sabatino

Big Club Digital LLC

Kevin Hewgley

Lockton Companies

Mark Calmes

Retired

Dean Funkenbusch

Anthony Mitchell

Accession Health

Kiel Peregrin

Bethesda

Gary Robert

retired

Jennifer Sengpiel

Westminster Christian Academy

Beth Shocklee

Evans & Dixon

Scott Strothkamp

Wolf & Taylor

Steve Ziegler

Boeing

Max Dougherty

Baer

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.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 02/02/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/02/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.