Myotonic Dystrophy Foundation
- Assets
- $5.8m
- Revenue
- $2.4m
- Investments
- $0.0
- Employees
- 5
- Location
- Oakland, CA
- Founding
- 03/2007
- Data as of
- 12/2021
- EIN
- 20-5014628
Organization Overview
Myotonic Dystrophy Foundation is located in Oakland, CA. The organization was established in 2007. According to its NTEE Classification (G40) the organization is classified as: Diseases of Specific Organs, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2021, Myotonic Dystrophy Foundation employed 5 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Myotonic Dystrophy Foundation 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 12/2021, Myotonic Dystrophy Foundation generated $2.4m in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 1.6% each year. All expenses for the organization totaled $1.5m during the year ending 12/2021. While expenses have increased by 1.4% per year over the past 7 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, Myotonic Dystrophy Foundation has awarded 25 individual grants totaling $1,517,004. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2021
Describe the Organization's Mission:
Part 3 - Line 1
TO LEAD AND MOBILIZE RESOURCES TOWARD EFFECTIVE MANAGEMENT, TREATMENT AND ULTIMATELY A CURE FOR MYOTONIC DYSTROPHY THROUGH EDUCATION, ADVOCACY AND RESEARCH.
Describe the Organization's Program Activity:
Part 3 - Line 4a
RESEARCH - WE RAISE ADDITIONAL FUNDS IN THE PRIVATE SECTOR IN ORDER TO ACCELERATE FURTHER UNDERSTANDING OF THE DISEASE THROUGH RESEARCH. MDF SUPPORTS BOTH CLINICAL AND SCIENTIFIC RESEARCH WITH A GOAL OF FINDING A TREATMENT AND EVENTUALLY A CURE FOR THIS CHRONIC, DEGENERATIVE DISEASE.
EDUCATION - WE STRIVE NOT ONLY TO HELP AFFECTED INDIVIDUALS, THEIR FAMILIES AND MEDICAL PROFESSIONALS UNDERSTAND THIS DISORDER, BUT ALSO TO RAISE AWARENESS ABOUT THE DISEASE IN THE GENERAL POPULATION. MDF SUPPORTS AND HELPS ORGANIZE CONFERENCES FOR AFFECTED FAMILIES AND MEDICAL PROFESSIONALS.
ADVOCACY - IN COLLABORATION WITH OTHER ORGANIZATIONS, WE ARE ESTABLISHING AND PERPETUATING LOCAL AND REGIONAL SUPPORT GROUPS TO OFFER EMOTIONAL SUPPORT AND HELP TO EDUCATE FAMILIES ABOUT THIS DISEASE. IN ADDITION TO PROVIDING INFORMATION ABOUT AVAILABLE SERVICES, WE ADVOCATE FOR INCREASED FUNDING FOR MYOTONIC DYSTROPHY RESEARCH AND PATIENT SUPPORT.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Tanya Stevenson CEO | Officer | 60 | $216,761 |
Jeremy Kelly Chair | OfficerTrustee | 5 | $0 |
David Herbert Treasurer | OfficerTrustee | 5 | $0 |
Elizabeth Florence Secretary | OfficerTrustee | 5 | $0 |
Martha Montag Brown Vice-Chair | OfficerTrustee | 5 | $0 |
Charles Thornton Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $951,839 |
| Related organizations | $0 |
| Government grants | $82,700 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,375,020 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $2,409,559 |
| Total Program Service Revenue | $23,300 |
| Investment income | $269 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | -$49,510 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $2,383,618 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $553,570 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $237,006 |
| Compensation of current officers, directors, key employees. | $37,687 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $313,624 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $16,898 |
| Payroll taxes | $37,561 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $17,475 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $190,915 |
| Advertising and promotion | $0 |
| Office expenses | $0 |
| Information technology | $662 |
| Royalties | $0 |
| Occupancy | $24,605 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $35,844 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $7,696 |
| All other expenses | $0 |
| Total functional expenses | $1,490,525 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $349,365 |
| Savings and temporary cash investments | $4,543,350 |
| Pledges and grants receivable | $903,607 |
| 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 | $49,754 |
| 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 | $5,846,076 |
| Accounts payable and accrued expenses | $64,138 |
| Grants payable | $722,500 |
| 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 | $0 |
| Other liabilities | $0 |
| Total liabilities | $786,638 |
| Net assets without donor restrictions | $4,347,279 |
| Net assets with donor restrictions | $712,159 |
| 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 | $0 |
| Total liabilities and net assets/fund balances | $5,846,076 |
Grants Awarded
Over the last fiscal year, Myotonic Dystrophy Foundation has awarded $563,494 in support to 6 organizations.
| Grant Recipient | Amount |
|---|---|
Rochester, NY PURPOSE: RESEARCH | $160,000 |
Houston, TX PURPOSE: RESEARCH FELLOWSHIP | $105,000 |
Somerville, MA PURPOSE: RESEARCH | $105,000 |
Gainesville, FL PURPOSE: RESEARCH | $83,494 |
UNIVERSITY OF NOTTINGHAM PURPOSE: RESEARCH | $55,000 |
UNVERSITY AT ALBANY PURPOSE: RESEARCH | $55,000 |
Grants Recieved
Over the last fiscal year, we have identified 23 grants that Myotonic Dystrophy Foundation has recieved totaling $488,855.
| Awarding Organization | Amount |
|---|---|
Network For Good Inc Washington, DC PURPOSE: UNRESTRICTED | $191,940 |
Schwab Charitable Fund San Francisco, CA PURPOSE: HEALTH | $137,500 |
Roundhouse Foundation Irrv Charitable Tr Sisters, OR PURPOSE: MYOTONIC DYSTROPHY FOUNDATION 2021 VIRTUAL GALA | $25,000 |
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $23,835 |
Patricia A And Milton C Badefoundation Inc Arcadia, CA PURPOSE: FOR THE 2021/2022 MYOTONIC DYSTROPHY FOUNDATION GALA | $20,000 |
Morgan Stanley Global Impact Funding Trust Inc Indianapolis, IN PURPOSE: UNRESTRICTED GENERAL SUPPORT | $18,000 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Myotonic Dystrophy Foundation Oakland, CA | $5,846,076 | $2,383,618 |
Cardiac Therapy Foundation Of The Midpeninsula Palo Alto, CA | $823,071 | $664,303 |
Heal Child Skin Disease Foundation Walnut Creek, CA | $397,470 | $347,007 |
Livermore High Cowboy Boosters Livermore, CA | $138,269 | $283,880 |
Rotarian Foundation Of Livermore Livermore, CA | $3,533,283 | $1,979,289 |
Viking Charities Inc Solvang, CA | $2,460,952 | $497,343 |
Hepatitis C Clinical Education Group Inc Garden Grove, CA | $68,034 | $0 |
Interventional Initiative Alamo, CA | $228,970 | $231,749 |
Western Urological Foundation Santa Ana, CA | $1,660,959 | $146,142 |
Pulmonary Fibrosis Now Inc Chino, CA | $166,149 | $0 |
Ovarian Cancer Alliance Of Arizona Phoenix, AZ | $55,395 | $0 |
Victory Church Of Deliverance Vallejo, CA | $175,557 | $0 |