The ALS Association Indiana Chapter

aka The ALS Association Indiana Chapter   |   Indianapolis, IN   |  www.alsaindiana.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

Tina Kaetzel

Main address

PO Box 56023

Indianapolis, IN 46256 USA

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EIN

35-2029321

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

Programs and results

What we aim to solve

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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?

ALS Multidisciplinary Clincs

The Chapter currently support two ALS multidisciplinary clinics in partnership with IU Hospital and the VA. These clinics provide the highest quality of care available and give people with ALS the opportunity to address all of their medical needs in one place at one time.

Population(s) Served
People with disabilities

The Chapter offers seven support groups throughout Indiana for patients, families, and their caregivers. Topics are a balance of education and discussion; sharing what it’s like to live with ALS and the challenges to keep functioning at the highest level possible. The Indianapolis Support Group can be accessed via live stream or by phone. Indianapolis (2); Evansville; Terre Haute; South Bend; Fort Wayne; Lafayette.

Population(s) Served
Caregivers
Families

Donated and recycled durable medical equipment is available for loan to ALS patients, based on medical and financial need, and is free of charge. Our Loan Equipment Closet is provided and maintained by National Seating and Mobility. Examples of items in our closet include lift chairs, mobility aids (including canes, walkers, wheelchairs, power chairs), bathroom items (shower chairs), patient lifts and more. We also gratefully accept donations of quality medical goods to maintain our loan closet inventory.

Population(s) Served
People with diseases and illnesses

The annual Research Update brings together physicians, medical professionals, patients, caregivers, and the larger Indiana community to educate and inform them on the progress of global research related to ALS and neuroscience.

Population(s) Served
Caregivers
Families

IU Health is part of the Northeast ALS (NEALS) Consortium, a group committed to ALS clinical trial research. IU has participated in many clinical trials since 1993. They also conduct their own research studies with the IU School of Medicine such as tests for a new drug developed at IU called CC100, which is shown to stop ALS progression in mice.

Population(s) Served
Adults

Where we work

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.

• 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 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

Access to Care:
ALS Multidisciplinary Clinics: Chapter supports three ALS clinics located VA Medical Center, IU Neuroscience Center, Parkview Neuroscience. Clinics provide the highest quality of care available and give people with ALS the opportunity to address all of their medical needs in one place at one time.

The Chapter offers various support groups throughout Indiana.

Advocacy: Building ALS Awareness we are identifying partnerships with media outlets to expand our voice.

Clevenger Family Financial Assistance Program in Memory of Mark Clevenger was created in partnership with The ALS Association Indiana Chapter to help Hoosiers battling ALS cover disease related expenses.

We have evaluated internal staff capabilities.

Impact of current operations- will not disrupt or negatively impact the delivery of current services and programs.

There is no competition with other organizations providing this program/service.

The Board of Directors are partnering to identify additional resources and other types of partnerships and financial support to enhance and growth services and mission delivery.

1. Needs assessment is in progress. Stage 4 of 6 to completion. Data analysis has begun.
2. Strategic plan evaluation in process for FY22-FY25
3. Execution- has not begun

Financials

The ALS Association Indiana Chapter
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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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The ALS Association Indiana Chapter

Board of directors
as of 2/26/2021
SOURCE: Self-reported by organization
Board chair

Josh Nicholson

Harrison Street

Term: 2018 -

Michael Millikan

Ice Miller, LLC

Derek French

Medxcel Facilities Management

Mona Euler

Community Hospital

Josh Nicholson

Huntington National Bank

Tina Kaetzel

The ALS Association Indiana Chapter

Brett Glaze

Heineken

Eric Bedel

Retired

Derek Miller

National, Seating & Mobility

Aimee Harvey

Zotec Partners

Manuel Ortiz-Smith

ARGI

Trent McBride

Lincare

Larry McQueary

Indy Fuel

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 02/15/2021

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
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability