Disease, Disorders, Medical Disciplines

The ALS Association Indiana Chapter

  • Indianapolis, IN
  • www.alsaindiana.org

Mission Statement

To lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig's disease and their families to live fuller lives by providing them with compassionate care and support.

Main Programs

  1. ALS Multidisciplinary Clincs
  2. In-Home Care Program
  3. ALS Nutrition Program
  4. ALS Support Groups
  5. ALS Loan Closet
  6. ALS Research Update
  7. ALS Research
Service Areas

Self-reported

Indiana

Serving ALS patients and families throughout the State of Indiana

ruling year

1990

Principal Officer since 2017

Self-reported

Tina Kaetzel

Keywords

Self-reported

ALS, amyotrophic, Lou Gehrig's disease, ALSA, The ALS Association, ALS Association of Indiana

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Also Known As

The ALS Association Indiana Chapter

EIN

35-2029321

 Number

4643595685

Physical Address

7202 E. 87th St., Ste. 102

Indianapolis, IN 46256

Contact

Cause Area (NTEE Code)

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.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

Expanding access to consistent care, treatment and community-based resource and support services to enhance quality of life for all affected by ALS.

Funding and accrediting Clinical Centers of Excellence that provide multidisplinary care proven to extend the lives of people living with ALS.

Supporting patients, caregivers, and their families in the most important and difficult journey of their life.

Programs

Self-reported by organization

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

Program 1

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.

Category

Health Care

Population(s) Served

Budget

Program 2

In-Home Care Program

The Chapter provides eligible families, living in Indiana, with in-home health care support resources. Being a family caregiver can consume a great deal of physical, mental, and emotional energy. Consequently, respite care is very important because it gives family caregivers of persons with ALS an opportunity to create a plan of care for themselves.

Category

Health Care

Population(s) Served

Budget

Program 3

ALS Nutrition Program

The ALS Association Indiana Chapter’s Nutrition Supplement Assistance Program addresses compromised nutrition leading to weight and muscle loss as a common and significant problem for people living with ALS. The program provides resources and information to assist with the nutritional needs for all stages of disease progression.

Category

Food, Agriculture & Nutrition

Population(s) Served

Budget

Program 4

ALS Support Groups

The Chapter offers five 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.

Category

Population(s) Served

Budget

Program 5

ALS Loan Closet

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.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Budget

Program 6

ALS Research Update

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.

Category

Medical Research

Population(s) Served

Budget

Program 7

ALS Research

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.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Budget

Charting Impact

Self-reported by organization

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

  1. What is the organization aiming to accomplish?
    People with ALS and their families have:
    o Access to consistent care, treatment and services
    o Resource and support services that enhance quality of life
    o Quality care and support leveraged by collaboration with partners
  2. What are the organization's key strategies for making this happen?
    ALS Multidisciplinary Clinics: Critical Support for Quality of Care
    The Chapter currently support two ALS multidisciplinary clinics in partnership with local hospitals VA Medical Center and IU Neuroscience Center. 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. The Chapter recognizes the importance of a continued focus on our clinic partnerships and will continuously explore new ways to better support our clinic teams.

    Support Groups: Meeting the Area Demand
    Support Groups provide an essential service to people living with ALS and their caregivers. They provide families the opportunity to receive resources, comfort and support from our caseworkers and from each other. The Chapter will be offers five support groups for people with ALS and their caregivers throughout Indiana. We will continue our efforts to enhance the support group experience by listening and responding to the feedback of the families we serve.

    Advocacy: Building ALS Awareness
    To improve the awareness of the ALS community and the needs of our patients. We are identifying partnerships with media outlets to expand our voice. The Chapter supports volunteers, patients and caregivers to travel and represent the Indiana Chapter on Capitol Hill twice a year. This will increase education and build strong relationships with key federal and state lawmakers, healthcare thought leaders and agencies that influence ALS research and ALS healthcare delivery.

    Home Healthcare Benefits: Respite Care
    We asked and listened to our patients and their caregivers. They need additional day to day support from a professional caregiver. We are evaluating our patients needs to devise a plan to increase Respite Care by 100% within 2 years. Allowing the Chapter to support additional family needs.
  3. What are the organization's capabilities for doing this?
    We have evaluated internal staff capabilities. We are in the process of hiring one additional development staff to support increase need for funding to implement goals. The Chapter is financial sustainable without negatively impacting other programs and service lines.

    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. We offer a clear advantage.

    The Board of Directors are partnering to identify additional resources and other types of support to achieve success.
  4. How will they know if they are making progress?
    The Chapter has quarterly benchmarks:
    1. Increase funding to underwrite strategic plan programs and services
    2. Annual needs assessment from patients and their caregivers
    3. Annual satisfaction survey from patients, caregivers, and physicians.
    4. Quarterly increase of participation from patients, utilizing programs and services. Percentage of change.
  5. What have and haven't they accomplished so far?
    1. Needs assessment is in progress. Stage 4 of 6 to completion. Data analysis has begun.
    2. Strategic plan submitted to Board of Directors
    3. Execution- has not begun
    4. Development director- interviews have begun
Service Areas

Self-reported

Indiana

Serving ALS patients and families throughout the State of Indiana

Funding Needs

The ALS Association of Indiana is completely donor and grant funded. We need financial assistance with operations, awareness initiatives, patient services programming, funding our multidisciplinary clinic, new laptops, a server and staffing.

External Reviews

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

THE INDIANA CHAPTER OF THE ALS ASSOCIATION INC
Fiscal year: Feb 01-Jan 31
Yes, financials were audited by an independent accountant.

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  • Forms 990 for 2016, 2015 and 2015
  • Board Chair and Board Members
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Operations

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

The ALS Association Indiana Chapter

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2016, 2015 and 2015
  • Board Chair and Board Members
  • Access to the GuideStar Community
Need the ability to download nonprofit data and more advanced search options? Consider a Premium or Pro Search subscription.

Principal Officer

Tina Kaetzel

Governance

BOARD CHAIR

Mona Euler

IU Health Neuroscience

Term: Jan 2016 -

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization


RESPONSE NOT PROVIDED

BOARD ORIENTATION & 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?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?