Nonprofit · EIN 06-1789643
THE NEUROMUSCULAR DISEASE FOUNDATION
Tax-exempt · BEVERLY HILLS, CA 90212
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990 | $65,419 | $352,447 | -$287,028 | $660,321 | $1,273 | $659,048 |
| December 31, 2023 | 990 | $561,017 | $499,650 | $61,367 | $948,612 | $2,517 | $946,095 |
| December 31, 2021 | 990 | $439,105 | $1,152,206 | -$713,101 | $1,475,338 | $1,498 | $1,473,840 |
Financial details: 990 for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $27,471
- Program service revenue
- $0
- Investment income
- $37,948
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $187,867
- Compensation of officers, directors and key employees
- $0
- Salaries, compensation and benefits (total)
- $0
- Professional fundraising fees
- $0
- Accounting fees
- $7,908
- Program services (functional)
- $318,036
- Management and general (functional)
- $28,137
- Fundraising (functional)
- $6,274
Balance sheet and other
- Total assets, start of year
- $948,612
- Total assets, end of year
- $660,321
- Total liabilities, end of year
- $1,273
- Net assets, end of year
- $659,048
- Gross receipts
- $65,419
- Employees
- 0
- Volunteers
- 10
- Year formed
- 2006
- State of legal domicile
- CA
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2024, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Navid Rachman | Director Trustee or director | 1 | $0 |
| Tara Voogel | Secretary Trustee or director, Officer | 1 | $0 |
| Amy Curran | Director Trustee or director | 1 | $0 |
| Tahseen Mozaffar | Director Trustee or director | 1 | $0 |
| Coleman Kennedy | CEO Trustee or director, Officer | 1 | $0 |
| David Golden | CFO Trustee or director, Officer | 1 | $0 |
| Suma Rao-Gupta | Director | 1 | $0 |
| David Haverim | Director | 1 | $0 |
| Isabella Tyszler | Director | 1 | $0 |
| David Dahl | Director | 1 | $0 |
990 for the year ended December 31, 2023: 8 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Navid Rachman | Director Trustee or director | 1 | $0 |
| Suma Rao-Gupta | Director Trustee or director | 1 | $0 |
| Tara Voogel | Secretary Trustee or director, Officer | 1 | $0 |
| Nasser David Haverim | Treasurer Trustee or director, Officer | 1 | $0 |
| Isabella Tyszler | Director Trustee or director | 1 | $0 |
| David Dahl | Director Trustee or director | 1 | $0 |
| Amy Curran | Director Trustee or director | 1 | $0 |
| Tahseen Mozaffar | Director Trustee or director | 1 | $0 |
990 for the year ended December 31, 2021: 12 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Lale Jackson Welsh | CEO | 40 | $207,667 |
| Nancy Lurie | COO | 40 | $87,500 |
| Geoffrey Gee | Executive Director | 40 | $13,689 |
| Ralph Loren | Co-Chair Trustee or director, Officer | 1 | $0 |
| Tricia Mullins | Co-Chair Trustee or director, Officer | 1 | $0 |
| Carolyn Becher | Secretary Trustee or director, Officer | 1 | $0 |
| David Dahl | Treasurer Trustee or director, Officer | 1 | $0 |
| Alex Monsef | Director Trustee or director | 0 | $0 |
| David Haverim | Director Trustee or director | 1 | $0 |
| Maria Montgomery | Director Trustee or director | 1 | $0 |
| Tahseen Mozaffar | Director Trustee or director | 1 | $0 |
| Jason Taban | Director Trustee or director | 1 | $0 |
Address and contacts
- Address (IRS master file)
- 269 S BEVERLY DR, BEVERLY HILLS, CA 90212-3807
- In care of
- % CAROLYN YASHARI BECHER
- Principal officer (990 for 2024)
- Coleman Kennedy, 269 South Beverly Drive 1206, Beverly Hills, CA 90212
- Signed the 990
- David Golden, CFO
- Phone
- (310) 721-1605
- Website
- www.curegnem.org
- Return prepared by
- Beeson Hoffman & Siddall Inc
California records
California keeps its own records of charities and corporations. Search them by EIN 06-1789643 or by the name THE NEUROMUSCULAR DISEASE FOUNDATION.
- Attorney General, Registry of Charities and Fundraisers
- Registration status and filed reports (CT-TR-1, RRF-1)
- Secretary of State, bizfile Online
- Corporation status, entity number, agent for service
- Franchise Tax Board
- Entity status letter (state tax exemption, good standing)
Mission
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.
Program accomplishments
- CLINICAL RESEARCH: Since 2006 NDF has been proactively seeking and funding clinical research projects to help understand GNE Myopathy (HIBM) and to hopefully help find treatments and cures. NDF is a world leader in funding scientists, universities and laboratories, the results of which have proven instrumental in how new studies are built.Expenses $248,068 · grants $116,201
- Patient & Carrier Advocacy: NDF strives to create a two-way connection between patients and scientists in order to maximize patient understanding about the latest research and treatment options being developed; and for physicians, scientists, and pharmaceutical companies to gain a better perspective, not only about patients needs and experiences, but also about how this impacts families as well.Expenses $54,066
- Outreach & Education: A significant part of NDF's mission is preventing and suppressing the symptoms of GNEM in patients through screening and public education. NDF values the importance of educating physicians about this rare disease. We focus on educating the public about carrier screening aids, particularly for those in populations with higher carrier rates.Expenses $15,902
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | Not on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 06-1789643
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2007
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G12)
- Assets (IRS master file)
- $660,321
- Income (IRS master file)
- $65,419
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2024 | $65,419 | $352,447 | $660,321 | XML |
| 990 | December 2023 | $561,017 | $499,650 | $948,612 | XML |
| 990 | December 2022 | $442,823 | $1,031,908 | $886,359 | IRS |
| 990 | December 2021 | $439,105 | $1,152,206 | $1,475,338 | XML |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
| 990 | December 2017 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 06-1789643).
Questions about THE NEUROMUSCULAR DISEASE FOUNDATION
- What is the EIN of THE NEUROMUSCULAR DISEASE FOUNDATION?
- The employer identification number (EIN) of THE NEUROMUSCULAR DISEASE FOUNDATION is 06-1789643.
- Is THE NEUROMUSCULAR DISEASE FOUNDATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2007.
- Are donations to THE NEUROMUSCULAR DISEASE FOUNDATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does THE NEUROMUSCULAR DISEASE FOUNDATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of THE NEUROMUSCULAR DISEASE FOUNDATION due?
- The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did THE NEUROMUSCULAR DISEASE FOUNDATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2024.
- Who is the principal officer of THE NEUROMUSCULAR DISEASE FOUNDATION?
- The 990 for the year ended December 31, 2024 names Coleman Kennedy.
- Who are the officers and directors of THE NEUROMUSCULAR DISEASE FOUNDATION?
- The 990 for the year ended December 31, 2024 lists 10 people; 0 received compensation from the organization.
- How much revenue does THE NEUROMUSCULAR DISEASE FOUNDATION have?
- On its 990 for the year ended December 31, 2024 it reported revenue of $65,419, expenses of $352,447 and total assets of $660,321 at year end.
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