The Neuromuscular Disease Foundation
- Assets
- $2.2m
- Revenue
- $439.0k
- Investments
- $0.0
- Employees
- 4
- Location
- Beverly Hills, CA
- Founding
- 01/2007
- Data as of
- 12/2020
- EIN
- 06-1789643
Organization Overview
The Neuromuscular Disease Foundation, operating under the name Na, is located in Beverly Hills, CA. The organization was established in 2007. According to its NTEE Classification (G12) the organization is classified as: Fund Raising & Fund Distribution, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2020, Na employed 4 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Na is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2020, Na generated $439.0k in total revenue. This represents relatively stable growth, over the past 6 years the organization has increased revenue by an average of 0.7% each year. All expenses for the organization totaled $1.4m during the year ending 12/2020. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2020
Describe the Organization's Mission:
Part 3 - Line 1
TO PROMOTE AND FUND RESEARCH FOR GENETIC NEUROMUSCULAR DISORDERS AND DISEASES. ADDITIONALLY, THE FOUNDATION MAY ENGAGE IN ANY ACTIVITIES THAT ARE REASONABLY RELATED TO OR IN FURTHERANCE OF ITS STATED CHARITABLE PURPOSES.
Describe the Organization's Program Activity:
Part 3 - Line 4a
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.
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.
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.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Lale Jackson Welsh CEO | Officer | 40 | $276,000 |
Nancy Lurie COO | Officer | 40 | $110,000 |
Carolyn Becher ESQ Secretary | OfficerTrustee | 1 | $0 |
Doran Adhami Treasurer | OfficerTrustee | 1 | $0 |
Ralph Loren Co-Chair | OfficerTrustee | 1 | $0 |
Tricia Mullins Co-Chair | OfficerTrustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $418,257 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $418,257 |
| Total Program Service Revenue | $0 |
| Investment income | $14,168 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $438,953 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $410,791 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $155,200 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $386,000 |
| Compensation of current officers, directors, key employees. | $77,200 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $105,455 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $28,682 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $5,125 |
| Fees for services: Accounting | $0 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $25,977 |
| Advertising and promotion | $36,014 |
| Office expenses | $0 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $6,303 |
| Travel | $6,010 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $16,102 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $3,905 |
| All other expenses | $62,324 |
| Total functional expenses | $1,383,468 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $86,527 |
| Savings and temporary cash investments | $2,137,022 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $0 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $2,223,549 |
| Accounts payable and accrued expenses | $0 |
| Grants payable | $0 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $26,250 |
| Other liabilities | $9,261 |
| Total liabilities | $35,511 |
| Net assets without donor restrictions | $0 |
| Net assets with donor restrictions | $0 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $2,188,038 |
| Total liabilities and net assets/fund balances | $2,223,549 |
Grants Awarded
Over the last fiscal year, The Neuromuscular Disease Foundation has awarded $410,791 in support to 5 organizations.
| Grant Recipient | Amount |
|---|---|
North Bethesda, MD PURPOSE: Research Genetic Disorders | $185,000 |
Columbus, OH PURPOSE: Research Genetic Disorders | $102,361 |
New Haven, CT PURPOSE: Research Genetic Disorders | $50,511 |
Columbus, OH PURPOSE: Research Genetic Disorders | $48,600 |
Cincinnati, OH PURPOSE: Research Genetic Disorders | $24,319 |
Grants Recieved
Over the last fiscal year, we have identified 3 grants that The Neuromuscular Disease Foundation has recieved totaling $200,354.
| Awarding Organization | Amount |
|---|---|
The Confidence Foundation South Pasadena, CA PURPOSE: IN SUPPORT OF THE 2021 FUNDRAISER AND PRE-CLINICAL RESEARCH ON GNE MYOPATHY | $200,000 |
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $344 |
Barton And Shirley Weisman Foundation Inc Boca Raton, FL PURPOSE: TO ENHANCE THE QUALITY OF LIVES OF PEOPLE LIVING WITH GNE MYOPATHY THROUGH ADVOCACY, EDUCATION, OUTREACH, AND FUNDING CLINICAL RESEARCH FOCUSED ON TREATMENTS AND A CURE | $10 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Global Genes Aliso Viejo, CA | $3,315,841 | $5,883,997 |
John Wayne Cancer Foundation Costa Mesa, CA | $19,544,868 | $1,886,224 |
The Familial Hypercholesterolemia Foundation Pasadena, CA | $6,401,928 | $4,759,952 |
Jessie Rees Foundation Rancho Santa Margarita, CA | $2,318,669 | $3,496,521 |
Hello Housing San Anselmo, CA | $571,806 | $2,684,046 |
The Neuromuscular Disease Foundation Beverly Hills, CA | $2,223,549 | $438,953 |
Emilio Nares Foundation San Diego, CA | $1,042,923 | $1,340,458 |
Gamechanger Charity Rancho Mission Viejo, CA | $66,864 | $595,676 |
Diabetes Research Connection Del Mar, CA | $1,933,836 | $804,111 |
Pedal The Cause - San Diego San Diego, CA | $880,045 | $1,362,913 |
Hay Foundation Carlsbad, CA | $5,847,331 | $539,117 |
The Baker Institute For Children With Hearing Loss Hanover St Palo Alto, CA | $2,973,416 | $691,906 |