Program areas at The Neuromuscular Disease Foundation
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.
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.
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.
Grants made by The Neuromuscular Disease Foundation
Who funds The Neuromuscular Disease Foundation
Grants from foundations and other nonprofits
Personnel at The Neuromuscular Disease Foundation
| Name | Title | Compensation | Date of data |
|---|
| Lale Welsh | Chief Executive Officer | $276,000 | 2021-10-05 |
| Nancy Lurie | Chief Operating Officer | $110,000 | 2021-06-25 |
| Geoffrey Gee | Executive Director | $0 | 2022-12-31 |
| Rachel Leib | Media and Operations Director / Board Member | | 2022-07-19 |
| Carol Gelbard | Emotional Wellness Director / Board Member | $0 | 2022-07-19 |
| ...and 5 more key personnel |
Financials for The Neuromuscular Disease Foundation
| Revenues | FYE 12/2022 | FYE 12/2021 | % Change |
|---|
| Total grants, contributions, etc. | $362,522 | $438,588 | -17.3% |
| Program services | $0 | $0 | - |
| Investment income and dividends | $14,437 | $517 | 2692.5% |
| Tax-exempt bond proceeds | $0 | $0 | - |
| Royalty revenue | $0 | $0 | - |
| Net rental income | $0 | $0 | - |
| Net gain from sale of non-inventory assets | $0 | $0 | - |
| Net income from fundraising events | $0 | $0 | - |
| Net income from gaming activities | $0 | $0 | - |
| Net income from sales of inventory | $0 | $0 | - |
| Miscellaneous revenues | $65,864 | $0 | 999% |
| Total revenues | $442,823 | $439,105 | 0.8% |
Organizations like The Neuromuscular Disease Foundation
| Organization | Type | Location | Revenue |
|---|
| Epilepsy Foundation of Greater Los Angel | 501(c)(3) | Los Angeles, CA | $1,788,459 |
| Pediatric Epilespy Surgery Alliance | 501(c)(3) | Los Angeles, CA | $320,621 |
| Wescoe Foundation for Pulmonary Fibrosis | 501(c)(3) | Coopersburg, PA | $153,735 |
| Center for Neurologic Study | 501(c)(3) | La Jolla, CA | $678,626 |
| The Max Cure Foundation | 501(c)(3) | New York, NY | $289,084 |
| The Woody Foundation | 501(c)(3) | Coral Gables, FL | $222,193 |
| Endometriosis Foundation of America (EFA) | 501(c)(3) | New York, NY | $1,527,339 |
| The Chelsea Hutchison Foundation | 501(c)(3) | Aurora, CO | $461,759 |
| Restless Legs Syndrome Foundation | 501(c)(3) | Austin, TX | $944,438 |
| Muscular Dystrophy Family Foundation | 501(c)(3) | Carmel, IN | $469,590 |
Data update history
December 31, 2023
Received grants
Identified 1 new grant, including a grant for $125,000 from Confidence Foundation December 3, 2023
Posted financials
Added Form 990 for fiscal year 2022
August 3, 2022
Posted financials
Added Form 990 for fiscal year 2020
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disordersMedical disciplines
Characteristics
Political advocacyProvides grantsConducts researchGala fundraisersTax deductible donations
General information
- Address
- 269 S Beverly Dr 1206
- Beverly Hills, CA 90212
- Metro area
- Los Angeles-Long Beach-Anaheim, CA
- Website URL
- curegnem.org/Â
- Phone
- (310) 721-1605
IRS details
- EIN
- 06-1789643
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 2006
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G50: Nerve, Muscle, and Bone Diseases
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
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