The Neuromuscular Disease Foundation
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.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2024 grant dollars across all 3 itemized grants.
Cities
Giving Over Time
Total grant dollars and number of grants per year
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
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
The most common grant size was under $50K: 14 grants of 21 (67%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Abigail Wexner Research Inst Columbus, OH | Research Genetic Disorders | $48,750 |
| University of Washington Seattle, WA | Research Genetic Disorders | $32,500 |
| Yale University New Haven, CT | Research Genetic Disorders | $31,618 |
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| 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
- Added Form 990 for fiscal year 2019 (received by the IRS November 16, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS October 5, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS September 15, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS October 24, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 14, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS November 17, 2025)
- 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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