Les Turner Amyothropic Lateral Sclerosis Foundation

aka Les Turner ALS Foundation   |   Skokie, IL   |  http://www.lesturnerals.org

Mission

The mission of the Les Turner ALS Foundation is to: provide the most comprehensive care and support to people living with ALS and their families in Chicagoland so they can confidently navigate the disease, and advance scientific research for the prevention, treatment and cure of ALS.

Ruling year info

1977

CEO

Ms. Andrea Pauls Backman

Main address

5550 W. Touhy Avenue Suite 302

Skokie, IL 60077 USA

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EIN

36-2916466

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

Neurology, Neuroscience (G96)

Fund Raising and/or Fund Distribution (A12)

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

Amyotrophic lateral sclerosis (ALS) is a terminal, progressive disease that causes muscle weakness, difficulty speaking and swallowing and, generally, complete paralysis. While technically considered a "rare disease", experts predict an individual's lifetime risk of acquiring ALS is about 1 in 300, by the age of 85. There is no cure, yet. ALS is scary. The Les Turner ALS Foundation exists to care for those affected by the disease, guide them to answers, support them and their loved ones and provide hope through scientific research. We coordinate care between our support services team and clinicians to collectively treat every aspect of the disease and support patients every step of the way. We host special events and educational opportunities to raise awareness and learn about the disease. Our Les Turner ALS Center at Northwestern Medicine brings together leading experts in ALS research, treatment and support who are committed to our family and to finding a cure.

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?

Support Services Team

The Support Services Team consists of ALS Support Services Coordinators (nurses and social workers), who are specially trained to provide ongoing information, assessment, support and coordination of care to ALS patients in the comfort and privacy of their own home.

Population(s) Served
Adults
People with disabilities

In 2014, the Foundation committed to funding at least $1 million annually to the Les Turner ALS Center. The mission of the Les Turner ALS Center at Northwestern Medicine is to strive for a future without ALS by accelerating leading-edge research while providing life-enhancing treatment to people living with ALS.

The Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine was established in 1986 as one of the first such multidisciplinary ALS clinics in the country and the very first in Chicago with funds from the James V. Insolia Family Foundation and the Les Turner ALS Foundation. At the Clinic, trained specialists use a team approach to provide comprehensive treatment.

The Lois Insolia ALS Clinic is part of Les Turner ALS Center at Northwestern Medicine’s Ken & Ruth Davee Department of Neurology. The Ken & Ruth Davee Department of Neurology is ranked #1 in Illinois and is one of the top 10 programs in the nation in neurologic education, research and clinical care. Northwestern is ranked by U.S. News as one of the top 10 hospitals nationwide for neurology and neurosurgery, making it the top-ranked Chicagoland hospital in this specialty.

Population(s) Served
Adults
People with disabilities

The Fund is designed to provide grants for short-term respite care for families with limited resources. Respite care provides the primary caregiver with time away from their care duties. This promotes well-being for both the caregiver and person with ALS and helps prevent caregiver burnout. Participants in the program also receive a visit from one of the Foundation’s ALS Support Services Coordinators.

Population(s) Served
Adults
People with disabilities

The Foundation's Patient and Family Service Grants alleviate expenses not covered by insurance.  Funds can be used for purchasing medical equipment, communication devices, and medications.

Population(s) Served
Adults
People with disabilities

The Transportation Fund allows ALS patients and their families to arrange free, comfortable, reliable transportation to and from their clinic appointments at the Lois Insolia ALS Center.

Population(s) Served
Adults
People with disabilities

The Foundation provides in-home technical assistance with augmentative communication devices as well as a loan program for those who are unable to purchase a device on his/her own due to financial hardship.

Population(s) Served
Adults

We host special events and educational opportunities throughout the year to raise awareness, learn about the disease. in 2020, we launched our ALS Learning Series, a new monthly webinar educational series, which will be supplemented by updated, complementary resources for patients and their families.

Population(s) Served
Health
Adults
Children and youth

Where we work

Accreditations

Better Business Bureau Wise Giving Alliance 2016

Awards

Four Star Rating 2016

Charity Navigator

Affiliations & memberships

Community Health Charities 2016

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.

1. Ensure no person with ALS goes without care, community and someday very soon, a cure.
2. Enhance our leadership role in comprehensive care and support of people living with ALS and their families in Chicago, in the nature and the world.
3. Partner seamlessly with our Les Turner ALS Center at Northwestern Medicine to improve and promote ALS research, clinical care and education.
4. Raise awareness and education professionals and the community about ALS.
5. Incorporate the patient voice to our decision making every step of the way.

1. Strengthen and broaden the Les Turner ALS Center at Northwestern Medicine's research and clinical programs.
2. Listen, design and implement the most advanced support and educational programs for people with ALS, their families and communities
3. Seek and find collaborative partners to roll out new programs in areas of advocacy, clinical trials, research, patient care and education.
4. Expand our board committees to include people living with ALS, in addition to clinicians, caregivers and former caregivers.

1. Increase and diversify fundraising and effectively manage limited resources to enhance our programs
2. Hire well and empower and train staff members to perform at peak effectiveness
3. Hire a Community Education Manager to increase the breadth and accessibility of educational resources to a wider group of patients and families.
3. Collaborate with our 70 researchers and clinicians at the Les Turner ALS Center at Northwestern Medicine to fund the most promising ALS basic research programs, advance clinical research, and provide exceptional care and support to patients and families living with the complex and devastating disease.
4. Empower board members, board committees and various task forces to advance our mission

1. We have experienced a 123% increase (more than double) in our home visit program since virtual visits were enacted, over the prior year.
2. Since reimagining our community education programs, we have seen a 68% increase in participation in our community education programs, including in-person seminars, virtual symposiums, professional in-services and webinars.
3. We have seen a 55% increase in website visits over the prior year due to more extensive resources available on our website.
4. Clinic visits are up by 3% over the prior year, despite the pandemic.

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.

  • Who are the people you serve with your mission?

    People living with ALS and their families.

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

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Case management notes, Constituent (client or resident, etc.) advisory committees,

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

    To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We added caregiver support groups and bereavement support groups to our larger support services offerings.

  • With whom is the organization sharing feedback?

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

  • How has asking for feedback from the people you serve changed your relationship?

    It deepens our engagement with those we serve by making them the focus and having them be part of the solution.

  • 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 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 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

Les Turner Amyothropic Lateral Sclerosis Foundation
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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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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.

Les Turner Amyothropic Lateral Sclerosis Foundation

Board of directors
as of 02/24/2022
SOURCE: Self-reported by organization
Board chair

Mr. Ken Hoffman

Retired - Signode Industrial Group

Joel Schechter

Law Office of Joel A. Schechter

Bonny Gaffen

No affiliation

Thomas Boleky

Beutel Hurst Boleky LLC

Robin Fern

Mary Lou Pisone

Northwestern Mutual Financial Network, Retired

Joshua Newsome

Goldman Sachs

Harvey Gaffen

RSM McGladrey

John Coleman

Northwestern Medical Group

Deborah Crockett

Ariel Investments

Janene Jonas

Aon Inpoint

Diana Pisone

Ted Moudis Associates

Erin Cohn

First Bank Chicago

Philip Schwarz

ABC7 Chicago

Sarvesh Soi

Buck Global, LLC

Melissa Wilder

Sr. Project Manager Verizon, Retired

Aalok Dave

Sr. Strategy & Planning Manager

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 2/22/2022

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 without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 02/22/2022

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 employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
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.