Myotonic Dystrophy Foundation
- Assets
- $6.8m
- Revenue
- $2.8m
- Investments
- $0.0
- Employees
- 5
- Location
- Oakland, CA
- Founding
- 03/2007
- Data as of
- 12/2022
- 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 12/2022, 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 12/2022, Myotonic Dystrophy Foundation generated $2.8m in total revenue. This represents relatively stable growth, over the past 8 years the organization has increased revenue by an average of 3.3% each year. All expenses for the organization totaled $2.5m during the year ending 12/2022. While expenses have increased by 8.0% per year over the past 8 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 31 individual grants totaling $2,562,004. 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
2022
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 | $226,657 |
Kleed Cumming Comm/tech Manager | 0 | $107,821 | |
Jeremy Kelly Chair | OfficerTrustee | 5 | $0 |
Martha Montag Brown Vice-Chair | OfficerTrustee | 5 | $0 |
Elizabeth Florence Secretary | OfficerTrustee | 5 | $0 |
David Herbert Treasurer | OfficerTrustee | 5 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $1,597,262 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,177,373 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $2,774,635 |
| Total Program Service Revenue | $66,768 |
| Investment income | $4,672 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | -$98,290 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $2,774,035 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $1,048,270 |
| 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. | $247,902 |
| Compensation of current officers, directors, key employees. | $17,485 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $348,019 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $9,738 |
| Payroll taxes | $40,507 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $2,200 |
| Fees for services: Accounting | $18,795 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $329,088 |
| Advertising and promotion | $0 |
| Office expenses | $0 |
| Information technology | $86 |
| Royalties | $0 |
| Occupancy | $25,017 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $369,135 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $1,768 |
| All other expenses | $0 |
| Total functional expenses | $2,506,145 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $370,582 |
| Savings and temporary cash investments | $2,606,142 |
| Pledges and grants receivable | $794,128 |
| 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 | $14,073 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $3,012,396 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $33,170 |
| Total assets | $6,830,491 |
| Accounts payable and accrued expenses | $65,774 |
| Grants payable | $1,388,750 |
| 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 | $33,687 |
| Total liabilities | $1,488,211 |
| Net assets without donor restrictions | $4,630,121 |
| 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 | $6,830,491 |
Grants Awarded
Over the last fiscal year, Myotonic Dystrophy Foundation has awarded $1,045,000 in support to 6 organizations.
| Grant Recipient | Amount |
|---|---|
SAPIENZA UNIVERSITY OF ROME PURPOSE: RESEARCH | $190,000 |
GRIMN PURPOSE: RESEARCH | $105,000 |
UNIVERSITE DE MONTREAL PURPOSE: RESEARCH | $105,000 |
UNVERSITY AT ALBANY PURPOSE: RESEARCH | $295,000 |
VIRGINIA COMMONWEALTH UNIVERS PURPOSE: RESEARCH | $190,000 |
UNIVERSITY OF FLORIDA PURPOSE: RESEARCH | $160,000 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Myotonic Dystrophy Foundation Oakland, CA | $6,830,491 | $2,774,035 |
Heal Child Skin Disease Foundation Walnut Creek, CA | $803,646 | $784,434 |
Cardiac Therapy Foundation Of The Midpeninsula Palo Alto, CA | $823,071 | $664,303 |
Viking Charities Inc Solvang, CA | $2,389,305 | $299,002 |
Rotarian Foundation Of Livermore Livermore, CA | $3,533,283 | $1,979,289 |
Hepatitis C Clinical Education Group Inc Garden Grove, CA | $68,034 | $0 |
Liver Health Foundation Redondo Beach, CA | $111,338 | $247,413 |
Interventional Initiative Alamo, CA | $153,284 | $21,746 |
Pulmonary Fibrosis Now Inc Chino, CA | $450,038 | $0 |
Western Urological Foundation Santa Ana, CA | $1,591,640 | $61,420 |
Victory Church Of Deliverance Vallejo, CA | $162,244 | $0 |
Ovarian Cancer Alliance Of Arizona Phoenix, AZ | $55,395 | $0 |
Love Multiplies Rancho Santa Margarita, CA | $14,621 | $0 |
Vaccine Research Foundation San Diego, CA | $1,951,975 | $1,950,746 |