Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd logo

Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd

Public charity · Grantmaker Skokie, IL EIN: 36-2916466 Website

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.

Key facts about Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd

In short: Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd gave $1.1M across 4 grants in 2024 (avg $282K), mostly in Illinois. Source: 2024 IRS Form 990.

EIN
36-2916466
Latest 990 filing
Form 990, 2024
Annual giving (2024)
$1,126,959
Grants made (2024)
4
Average grant
$281,740
Median grant
$200,000
Total assets
$4,414,309
Primary geography
Illinois (100% of itemized 2024 grant dollars)
Next open deadline
April 1, 2027 (Iron Horse Scholarship)

Data from IRS Form 990, 2024; updated September 2026.

Financial Overview

From 2024 IRS Form 990 · View filing

Total Assets

$4.4M

+34.3% YoY

Annual Giving

$1.1M

-7.5% YoY

Grant Count

4

+0.0% YoY

Avg Grant Size

$282K

-7.5% YoY

How Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd gives

  • Giving fell 24% from 2021 to 2024. Method

From the foundation's IRS Form 990 filings. Methodology.

About Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd

Based on IRS filings

Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd is a public charity, based in Skokie, IL. IRS filing data is available from 2019 through 2024. As of 2024, the organization holds $4.4M in total assets. In 2024, it awarded 4 grants totaling $1.1M. Net investment income was $107K.

Open Grants

1 open opportunity from Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

1state

Share of 2024 grant dollars across all 4 itemized grants.

States

Cities

Chicago

Giving Over Time

Total grant dollars and number of grants per year

$0$1M$2M$3M5 grants2019 3 grants2020 3 grants2021 4 grants2022 4 grants2023 4 grants2024

From 2019 to 2024, annual grant giving ranged from $916K (2022) to $2.3M (2019). In 2024 it made 4 grants totaling $1.1M.

Grant Insights

How this funder distributes its grants

Top Recipients

Top 2 recipients in 2024

Northwestern University Feinberg School of Medicine: $827K across 3 grantsNorthwestern UniversityFeinberg School of Medicine$827K · 3 grantsLois Insolia ALS Clinic: $300KLois Insolia ALS Clinic$300K

The largest 2024 recipient was Northwestern University Feinberg School of Medicine ($827K across 3 grants). Together the top 2 received $1.1M.

Grant Size Distribution

18 grants across all recorded years

3<$50K$50–100K3$100–250K5$250–500K7$500K–1M$1–5M$5M+

The most common grant size was in the $500K–1M range: 7 grants of 18 (39%).

Giving History

Grant recipients and amounts by year

RecipientPurposeAmount
Northwestern University Feinberg School of Medicine Chicago, ILResearch to Find a Cure$700,000
Lois Insolia ALS Clinic Chicago, ILClinic for the Therapy of ALS Patients$300,000
Northwestern University Feinberg School of Medicine Chicago, ILEndowment for ALS Research and Patient Center$100,000
Northwestern University Feinberg School of Medicine Chicago, ILEducation$26,959

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Net Investment Income
$0$2M$4M$6M2019 2020 2021 2022 2023 2024
Metric202420232022
Total Assets$4,414,309$3,286,760$3,764,134
Revenue$4,524,784$2,682,408$2,660,033
Expenses$3,333,281$3,355,940$2,786,124
Net Investment Income$107,409$102,365$28,645

Data update history

When this profile's IRS filing data changed on Grantable

  1. Updated Form 990 for fiscal year 2023 (received by the IRS July 26, 2024)
  2. Updated Form 990 for fiscal year 2024 (received by the IRS September 3, 2025)
  3. IRS filings on file for fiscal years 2019–2024

Leadership & Key People

Officers and directors from IRS filings

Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd is led by Laura Freveletti, Chief Executive Officer on every filing since 2023; 4 of 23 officers listed in 2024 are compensated.

Officers on the 2024 filing

  • Laura Freveletti

    Chief Executive Officer

    On filings since 2023

    40 hrs/week

    $148K (2023) → $191K (2024)

  • Erin Reardon Cohn

    Board Chair

    Director → Treasurer, 2020

    Treasurer → Board Chair, 2022

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Mark Heiden

    Director of Communications

    New on the 2024 filing

    40 hrs/week

    $128K (2024)

  • Bonny Gaffen

    Director

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Diana Pisone

    Director

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Janene Jonas

    Director

    Secretary → Director, 2021

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Jodi M. Harris

    Director

    Director → Vice Chair, 2023

    Vice Chair → Director, 2024

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Joshua Newsome

    Director

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Ken Hoffman

    Director

    Board Chair → Treasurer, 2022

    Treasurer → Director, 2024

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Mary Lou Pisone

    Director

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Sarvesh Soi

    Director

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Aalok Dave

    Director

    On filings since 2021

    2 hrs/week

    No compensation reported

  • Frank Granata

    Director

    On filings since 2022

    2 hrs/week

    No compensation reported

  • Sean Fallon

    Director

    On filings since 2022

    2 hrs/week

    No compensation reported

  • Tina Cascio

    Director

    On filings since 2022

    2 hrs/week

    No compensation reported

  • Lauren Webb

    Chief Advocacy & Outreach Officer

    Director of Support Services & Education → Director of Support Services, 2021

    Director of Support Services → Chief Advocacy & Outreach Officer, 2024

    On filings since 2020

    40 hrs/week

    $101K (2020) → $121K (2024)

  • Constance Paesel

    Chief Operations Officer

    New on the 2024 filing

    40 hrs/week

    $114K (2024)

  • Deborah Crockett

    Treasurer

    Director → Treasurer, 2024

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Harvey Gaffen

    Chair Emeritus

    Treasurer → Chair Emeritus, 2020

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Joel A. Schechter

    Vice Chair

    On filings since 2019

    2 hrs/week

    No compensation reported

  • John Coleman III MD

    Vice Chair

    Director → Vice Chair, 2021

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Robin Fern

    Vice Chair

    On filings since 2019

    2 hrs/week

    No compensation reported

  • Thomas F. Boleky

    Vice Chair

    On filings since 2019

    2 hrs/week

    No compensation reported

Former officers (9)
  • Former: Andrea Pauls Backman (2019–2023) — CEO
  • Former: Steve Schapiro (2020–2023) — Director of Development
  • Former: Rich Ashlin (2022–2023) — Director
  • Former: Matthew Brown (2019–2022) — Director
  • Former: Melissa Wilder (2019–2022) — Director
  • Former: Philip Schwarz (2019–2022) — Director
  • Former: Daniel Libit (2019–2020) — Director
  • Former: David T. Hoppe (2019–2020) — Director
  • Former: Meg Rooney (2019–2020) — Director

Data from IRS Form 990 filings, 2019–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.

Compensation Overview

From 2024 IRS filing

Laura Freveletti — Chief Executive Officer: $191KLaura FrevelettiChief Executive Officer$191KMark Heiden — Director of Communications: $128KMark HeidenDirector of Communications$128KLauren Webb — Chief Advocacy and Outreach Officer: $121KLauren WebbChief Advocacy and Outreach…$121KConstance Paesel — Chief Operations Officer: $114KConstance PaeselChief Operations Officer$114K

The highest reported compensation on the 2024 filing was $191K, to Laura Freveletti (Chief Executive Officer). 4 officers or directors reported compensation on that filing.

Frequently asked questions about Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd

How much does Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd give each year?

Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd gave $1.1M across 4 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $1.2M across 4 grants.

What is Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd's typical grant size?

Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd's median grant in 2024 was $200,000, and its average grant was $281,740, across 4 grants on its 2024 IRS Form 990.

Where does Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd give grants?

Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd gives mostly in Illinois: 100% of the grant dollars itemized on its 2024 IRS Form 990 went to recipients there. The most frequent recipient cities were Chicago, IL (4 grants).

Does Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd give general operating support?

Not in 2024: none of the 4 grants with a stated purpose on Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd's 2024 IRS Form 990 were described as general or operating support.

How large is Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd?

Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd reported $4.4M in total assets on its 2024 IRS Form 990. Its revenue that year was $4.5M.

What is Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd's EIN?

Les Turner Amyotrophic Lateral Sclerosis Foundation Ltd's EIN (Employer Identification Number) is 36-2916466. IRS Form 990 filing data is available on this page for 2019–2024.

Data last updated September 2026. Sourced from IRS Form 990 filings.

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