GOLD2024

ALS Arizona

END ALS

PHOENIX, AZ   |  http://www.alsaz.org/

Learn how to support this organization

Mission

Advocating for a cure and supporting individuals with ALS to embrace life to the fullest.

Ruling year info

2024

President & CEO

Taryn Norley

Main address

360 E Coronado Rd Ste 140

PHOENIX, AZ 85004 USA

Show more contact info

EIN

86-0727136

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

Services to Promote the Independence of Specific Populations (P80)

Nerve, Muscle, Bone Research (H50)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2023, 2022 and 2021.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Advocating for a cure and supporting individuals with ALS to embrace life to the fullest.

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?

Care Services Program

ALS Arizona is committed to enhancing those living with ALS quality of life through the many cost free programs we offer to individuals and families affected by ALS. We understand the value of those with the disease being able to communicate, function safely in their home, and travel to ALS Clinics for comprehensive evaluation and treatment. Our programs are designed to meet these essential care needs as well as the emotional needs of those in our community and caregivers.

Population(s) Served
Terminally ill people
Adults
Veterans

ALS Arizona's comprehensive care approach unites a specialized team of healthcare professionals equipped to meet the requirements of individuals living with ALS, facilitating the receipt of diverse care services in one visit. Typically, this team comprises a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech-language pathologist, social worker, mental health professional, and an ALS Arizona liaison.

Population(s) Served
Terminally ill people
Adults
Veterans

In partnership with Numotion, ALS Arizona loans equipment to aid in daily living activities and with mobility.

Population(s) Served
Terminally ill people
Adults
Veterans

Patients that are registered with ALS Arizona that do not have a wheelchair van, may get complimentary transportation to their Multidisciplinary Clinics whom ALS Arizona participates with.

Patients are picked-up at their homes and returned after the medical visit.

Population(s) Served
Terminally ill people
Adults
Veterans

Respite Care services are provided for caregivers to give time off from the demands of providing constant care.

Population(s) Served
Terminally ill people
Adults
Veterans

In-person and virtual support groups for people living with ALS, caregivers, family members, and friends.

Population(s) Served
Families
Non-adult children
Children and youth
Veterans

We provide youth-focused support groups, guidance, and referrals.

Population(s) Served
Families
Non-adult children

When it comes to managing your symptoms, some challenges are best addressed by a consultant who understands the secondary medical concerns that may arise as a result of ALS disease progression.

Population(s) Served
Adults
Terminally ill people
Adults
Terminally ill people
Adults
Terminally ill people
Adults
Terminally ill people
Veterans

Where we work

Affiliations & memberships

ALS United 2023

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.

ALS Arizona symbolizes the hopes of people everywhere that Amyotrophic Lateral Sclerosis will one day be a disease of the past, conquered by the dedication of thousands who have worked ceaselessly to understand and eradicate it.

Until that day comes, ALS Arizona relentlessly pursues its mission to help people living with ALS and to leave no stone unturned in the search for a cure for this progressive neurodegenerative disease.

The programs that ALS Arizona provides are free of charge, with the intent to maximize the independence and quality of life for ALS patients as long as possible, along with providing a network of support for patients and their families.

The current programs offered to our patients include:

Medical Equipment Loan Closet Medical equipment required to meet the changing needs of the ALS patient as the disease progresses is loaned at no charge.

Transportation Program Offers transportation to ALS medical appointments free of charge.

Support Groups support groups provide opportunities for participants to share their experiences and learn more about living with ALS. Support Groups are offered in a variety of locations free of charge and open to anyone impacted by ALS.

Respite Care Typically, the 24 hour care required for a person living with ALS falls on a family member who must also continue the duties of maintaining a household, and often times, a job. The Respite Care program provides funding to allow for a much needed break from the rigors of daily caregiving.

Multidisciplinary Clinics These Clinics are designed to coordinate the involvement of all necessary healthcare disciplines and provide state of the art clinical management and wrap-around services for the care of the ALS patient and family.

Youth Program - This program is designed to normalize the unique experiences children with a family member diagnosed with ALS face. Through fun, interactive program sessions, participants have the opportunity to meet, bond, share with, and support their peers.

ALS Arizona has two fundraising walks, Walk ALS, annually, as well as two annual gala events. These special events, along with participating in additional fundraising efforts and working with generous partners across the valley allow ALS Arizona to fund and grow the programs offered to ALS patients and their families.

Additionally, ALS Arizona offers many opportunities for volunteers to get involved. From day to day administrative tasks, to event planning, our volunteers are engaged in a variety of activities with varying levels of responsibility.

From 2022-2023, ALS Arizona accomplished:

Serving 576 ALS patients with the highest quality care and support.

5,497 Home visits and care consultations made to patients and their families by our Care Services Staff

740 pieces of medical equipment were loaned to ALS patients.

145 Hours of patient and family counseling services provided by our contracted counseling staff

186 Hours spent by our respiratory therpist helping patients with respiratory needs

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 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 identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

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

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome

Financials

ALS Arizona
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Operations

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

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  • Compare nonprofit financials to similar organizations

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • 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.

ALS Arizona

Board of directors
as of 05/20/2024
SOURCE: Self-reported by organization
Board chair

Robert Meyncke

Goldman Sachs

Mark Kittredge

Public Defender, Maricopa County

Anthony Peterson

Senior Vice President, Commercial Banking at BOK Financial

Jim Mortensen

Early Warning Services | Vice President, Product Development

Trevor Davenport

Global Program Manager, BTP Core Security PMO at SAP

Robert Meyncke

Goldman Sachs | Vice President, Divisional Sales Manager

Beau Baukol, PhD

AZFSM Yield Dept Manager | Intel Corp

Robert Bowser

Chair, Division of Neurobiology Director, Gregory W. Fulton ALS Research Center Professor of Neurology and Neurobiology St. Joseph's Hospital and Medical Center & Barrow Neurological Institute

Donna McArthur, PhD

Retired

Dan Roder

Partner, Ernst & Young

Mark Hutchins

My Home Group, CO-Owner

Kris Schatzberg

Global Real Estate Advisor Engel& Volkers Scottsdale

Shelley Hearn

Retired-City of Tempe Community Services Director

Jeremy Shefner

Professor and Chief of Neurology Barrow Neurological Institute

Bennett Blakeman

CEO, K Pharmaceuticals

Jim Elco

Vice President, Strategy & Financial Planning, Northern Arizona Healthcare

Kevin Gallagher

Owner, Innovative Safety Solutions, LLC/ Person living with ALS

Elizabeth Hannaman

Finance/Vice President Finance, Republic Services

Scott Keniston

Person Living with ALS

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 5/16/2024

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:

Race & ethnicity
Hispanic/Latino/Latina/Latinx
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 05/16/2024

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 disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • 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 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.