The Neuromuscular Disease Foundation logo

The Neuromuscular Disease Foundation

Public charity · Grantmaker Beverly Hills, CA EIN: 06-1789643 Website

THE NEUROMUSCULAR DISEASE FOUNDATIONS (NDF) MISSION mission is to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM) through advocacy, education, outreach, and funding for critical research focused on treatments and a cure.

Key facts about The Neuromuscular Disease Foundation

In short: The Neuromuscular Disease Foundation gave $113K across 3 grants in 2024 (avg $38K), top state Ohio. Source: 2024 IRS Form 990.

EIN
06-1789643
Latest 990 filing
Form 990, 2024
Annual giving (2024)
$112,868
Grants made (2024)
3
Average grant
$37,623
Median grant
$32,500
Total assets
$660,321
Primary geography
Ohio (43% of itemized 2024 grant dollars)

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

Financial Overview

From 2024 IRS Form 990 · View filing

Total Assets

$660K

-30.4% YoY

Annual Giving

$113K

+197.0% YoY

Grant Count

3

-25.0% YoY

Avg Grant Size

$38K

+296.0% YoY

How The Neuromuscular Disease Foundation gives

  • Giving fell 44% from 2021 to 2024. Method

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

About The Neuromuscular Disease Foundation

Based on IRS filings

The Neuromuscular Disease Foundation is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Beverly Hills, CA. IRS filing data is available from 2019 through 2024. As of 2024, the organization holds $660K in total assets. In 2024, it awarded 3 grants totaling $113K. Net investment income was $38K.

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

5states

Share of 2024 grant dollars across all 3 itemized grants.

Cities

New HavenColumbusBethesdaCincinnatiSeattleDoyelstownWoodbridge

Giving Over Time

Total grant dollars and number of grants per year

$0$200K$400K$600K3 grants2019 5 grants2020 4 grants2021 5 grants2022 4 grants2023 3 grants2024

From 2019 to 2024, annual grant giving ranged from $38K (2023) to $411K (2020). In 2024 it made 3 grants totaling $113K.

Grant Insights

How this funder distributes its grants

Top Recipients

Top 3 recipients in 2024

Abigail Wexner Research Inst: $49KAbigail Wexner Research Inst$49KUniversity of Washington: $33KUniversity of Washington$33KYale University: $32KYale University$32K

The largest 2024 recipient was Abigail Wexner Research Inst ($49K). Together the top 3 received $113K.

Grant Size Distribution

21 grants across all recorded years

14<$50K5$50–100K2$100–250K$250–500K$500K–1M$1–5M$5M+

The most common grant size was under $50K: 14 grants of 21 (67%).

Giving History

Grant recipients and amounts by year

RecipientPurposeAmount
Abigail Wexner Research Inst Columbus, OHResearch Genetic Disorders$48,750
University of Washington Seattle, WAResearch Genetic Disorders$32,500
Yale University New Haven, CTResearch Genetic Disorders$31,618

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Net Investment Income
$0$1M$2M$3M2019 2020 2021 2022 2023 2024
Metric202420232022
Total Assets$660,321$948,612$886,359
Revenue$65,419$561,017$442,823
Expenses$352,447$499,650$1,031,908
Net Investment Income$37,948$39,034$14,437

Data update history

When this profile's IRS filing data changed on Grantable

  1. Added Form 990 for fiscal year 2019 (received by the IRS November 16, 2020)
  2. Updated Form 990 for fiscal year 2020 (received by the IRS October 5, 2021)
  3. Updated Form 990 for fiscal year 2021 (received by the IRS September 15, 2022)
  4. Updated Form 990 for fiscal year 2022 (received by the IRS October 24, 2023)
  5. Updated Form 990 for fiscal year 2023 (received by the IRS November 14, 2024)
  6. Updated Form 990 for fiscal year 2024 (received by the IRS November 17, 2025)
  7. IRS filings on file for fiscal years 2020–2024

Leadership & Key People

Officers and directors from IRS filings

The Neuromuscular Disease Foundation is led by Coleman Kennedy, CEO on the 2024 filing; none of the 10 officers listed in 2024 report compensation.

Officers on the 2024 filing

  • Coleman Kennedy

    CEO

    New on the 2024 filing

    1 hr/week

    No compensation reported

  • David Haverim

    Director

    On filings since 2019

    1 hr/week

    No compensation reported

  • Tahseen Mozaffar

    Director

    On filings since 2019

    1 hr/week

    No compensation reported

  • David Dahl

    Director

    Treasurer → Director, 2023

    On filings since 2021

    1 hr/week

    No compensation reported

  • Amy Curran

    Director

    On filings since 2023

    1 hr/week

    No compensation reported

  • Isabella Tyszler

    Director

    On filings since 2023

    1 hr/week

    No compensation reported

  • Navid Rachman

    Director

    On filings since 2023

    1 hr/week

    No compensation reported

  • Suma Rao-Gupta

    Director

    On filings since 2023

    1 hr/week

    No compensation reported

  • Tara Voogel

    Secretary

    On filings since 2023

    1 hr/week

    No compensation reported

  • David Golden

    CFO

    New on the 2024 filing

    1 hr/week

    No compensation reported

Former officers (15)
  • Former: Nasser David Haverim (2023) — Treasurer
  • Former: Carolyn Becher (2019–2022) — Secretary
  • Former: Jason Taban (2019–2022) — Director
  • Former: Ralph Loren (2019–2022) — Co-Chair
  • Former: Tricia Mullins (2019–2022) — Co-Chair
  • Former: Maria Montgomery (2020–2022) — Director
  • Former: Alex Monsef (2021–2022) — Director
  • Former: Geoffrey Gee (2021–2022) — Executive Director
  • Former: Lale Jackson Welsh (2019–2021) — CEO
  • Former: Nancy Lurie (2019–2021) — COO
  • Former: Doran Adhami (2019–2020) — Treasurer
  • Former: Michael Banayan (2019–2020) — Director
  • Former: Carol Gelbard (2019) — Director
  • Former: Michelle Halloosim (2019) — Director
  • Former: Sogol Ashourpour (2019) — 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.

Frequently asked questions about The Neuromuscular Disease Foundation

How much does The Neuromuscular Disease Foundation give each year?

The Neuromuscular Disease Foundation gave $113K across 3 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $38K across 4 grants.

What is The Neuromuscular Disease Foundation's typical grant size?

The Neuromuscular Disease Foundation's median grant in 2024 was $32,500, and its average grant was $37,623, across 3 grants on its 2024 IRS Form 990.

Where does The Neuromuscular Disease Foundation give grants?

The Neuromuscular Disease Foundation's top state is Ohio, with 43% of the grant dollars itemized on its 2024 IRS Form 990. The next largest states were Washington (29%) and Connecticut (28%).

Does The Neuromuscular Disease Foundation give general operating support?

Not in 2024: none of the 3 grants with a stated purpose on The Neuromuscular Disease Foundation's 2024 IRS Form 990 were described as general or operating support. Recurring purposes include "Research Genetic Disorders" (3 grants).

How large is The Neuromuscular Disease Foundation?

The Neuromuscular Disease Foundation reported $660K in total assets on its 2024 IRS Form 990. Its revenue that year was $65K.

What is The Neuromuscular Disease Foundation?

The Neuromuscular Disease Foundation is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Beverly Hills, CA. It holds $660K in total assets as of 2024.

What is The Neuromuscular Disease Foundation's EIN?

The Neuromuscular Disease Foundation's EIN (Employer Identification Number) is 06-1789643. 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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