ALS Association Mid-America Chapter

Overland Park, KS   |  www.alsa-midamerica.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

Ms. Colleen E Wachter

Main address

6405 Metcalf Ave. Suite 205

Overland Park, KS 66202 USA

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Formerly known as

ALS Association - Keith Worthington Chapter

EIN

48-1021611

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

Specifically Named Diseases (G80)

Nerve, Muscle, Bone Research (H50)

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?

Case Management and Consultation

Provide personal contact to discern needs and coordinate services for people with ALS and their families. Provide information and services to empower clients to make informed decisions in managing living with ALS.

Population(s) Served
Adults

By providing information about the disease and its progression, The ALS Association increases the level of understanding for clients, their families and caregivers, and helps them better navigate disease progression and make educated decisions about care. Through in-service training for healthcare professionals, professional staff provides training and information to those caring for ALS patients including doctors, nurses and hospice and healthcare providers, about the proper care of and management for the disease. Mailed and emailed each month, the Local Connections and eConnections newsletters provide vital information and awareness to people with ALS, caregivers, families and friends with an interest in ALS.

Population(s) Served
Adults

Multi-disciplinary teams meet weekly at the University of Kansas Health System and Nebraska Medicine, and monthly at the University of Missouri Healthcare, Ozark Medical Center and in Wichita for the Telemedicine Clinic. These knowledgeable teams provide individualized treatment plans and care for people with ALS. The Certified Centers at The University of Kansas Health System and Nebraska Medicine conduct ALS Research through drug and clinical trials

Population(s) Served
Adults

Where we work

Awards

Affiliations & memberships

Affiliate/Chapter of National Organization (i.e. Girl Scouts of the USA, American Red Cross, etc.) - Affiliate/chapter 1988

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.

The ALS Association Mid-America Chapter aims to recognize interdependence between care and research.

The ALS Association Mid-America Chapter plans to enhance resourcing for people living with ALS through partnerships, collaboration and a robust and sustainable programs and services.

The ALS Association's nationwide network of chapters provides us with a unique ability to provide comprehensive patient services and support to the ALS community.  In our 40 years as a chapter, we have established and are coordinating multi-disciplinary care through certified treatment centers and are fostering government and community partnerships.

-The Chapter has successfully collaborated with The ALS Certified Treatment Center of Excellence at the University of Kansas Medical Center and medical professionals in Wichita to establish the Wichita ALS Clinic. The clinic is a combination of a telehealth visit and a comprehensive in-person care team. The local care team consists of a physical/occupational therapist, respiratory therapist, speech therapist, and dietician as well as a masters level social worker who is a care services specialist from The Mid-America Chapter staff. A meeting with each discipline is followed by a one-on-one telehealth appointment with a neurologist. The initiatives of dedicated staff support, access to clinic and the specialized training and education of equipment are imperative to addressing the needs of the clients. Both multidisciplinary clinics and telehealth initiatives are necessary to providing a network of access to consistent clinical care across the chapter network. We continue to strive to develop and implement new ideas and delivery strategies, with an emphasis on collaboration. Finding resources and potential partners in rural areas has proven to be challenging. Continued research and exploration for clinical and telehealth opportunities are a constant focus. -For families living with ALS, the emotional, physical and financial challenges can be overwhelming. As the disease progresses and the person with ALS loses their abilities and independence, family members often have the responsibility of the day to day caregiving tasks as well as home, yard, and car maintenance, to transportation to the clinic and/or hospital, to home accessibility and communication options. The Care Services department and Program Committee has developed a new Quality of Life Grants program in 2018 to assist ALS families with the challenges they face every day. The Quality of Life Grants will grant up to $400 every calendar year to ALS families for their needs in respite, communication, home modification, access to medical care and for special circumstances. In the first year, we have served 119 families issuing $46,740 in grant awards. Each ALS Family that is awarded funds from the Quality of Life Grants Program is asked to complete a satisfaction survey. - To provide information and education, the ALS Navigator was developed. This is a comprehensive tool intended to educate and raise awareness about ALS by offering information and guidance related to the many aspects of the disease. The flash drive provides articles, infographics, useful links and more among the available resources for disease management and progression. Every new client receives this tool in their new client kit, along with resource materials and booklets. -We have built and enhanced a targeted and customized educational outreach program to professionals, with an emphasis on rural areas. Clients are being diagnosed and introduced to the chapter quicker which improves their quality of life. Our increasing number of client population is representative of this. -Disease progression is being monitored and tracked by care service specialists to provide assistance in managing client symptoms and provide increased support of those quickly progressing. -Our Portal Project is in its infancy and was launched in 2018. We are piloting this project and have come into challenges with the design of the software. Every client with an email on file is granted access to the portal. For some clients, the use of technology and the barriers of interacting with an app are an an obstacle. The ability of being able to provide an FRS score will allow us to track disease progression and to provide greater quality of life through disease management. -Currently accessing staffing structure to handle increased caseloads of over 600 clients annually and a greater number of days at clinic. Our budget allows for this increase to staffing to support programs and services.

Financials

ALS Association Mid-America Chapter
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Operations

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

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ALS Association Mid-America Chapter

Board of directors
as of 11/10/2021
SOURCE: Self-reported by organization
Board chair

Mr. Chris Tonniges

Lutheran Family Services of Nebraska

Term: 2019 - 2023

Nancy Creasy

Blue Cross Blue Shield of Kansas City

Pete Story

CMI

Dave Watkins

Swanson Bernard

David Wurth

Community Volunteer

Jason Leiker

Levy Craig

Robert Hunter

Stinson

Greg Steinberg

Platform Ventures

Chris Tonniges

Luther Family Services of Nebraska

Jay Daugherty

Daugherty Mediation

Kelly Bosak

NorthPoint Development

Patrick Oaks

Taylor Dunn

Jamie Drendel

Steven St. John

Sports Radio 810 WHB

Ross Simpson

Chris Wilson

The University of Kansas Heath System

Dan Janatello

John Bennett

Johnson County Judge, Retired

Adam Smith

KPMG

Austin Walsh

Austin Walsh Studios

Alissa Wehmueller

Helix Architecture + Design

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? Not applicable
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • 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? Not applicable
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Not applicable
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 11/3/2021

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

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data