Myotonic Dystrophy Foundation
Organization summary
Type of Nonprofit
Designated as a Organizations for any of the following purposes: religious, educational, charitable, scientific, literary, testing for public safety, fostering national or international amateur sports competition (as long as it doesn't provide athletic facilities or equipment), or the prevention of cruelty to children or animals.
Category: Diseases, Disorders, Medical Disciplines / Diseases of Specific Organs (NTEE)
Donations to this organization are tax deductible.
Summary charts: organization finances over time
Revenue $2.77M (2022)
Expenses $2.51M (2022)
Total Assets $6.83M (2022)
Total Liabilities $1.49M (2022)
Tax Filings by Year
Form 990 is an information return that most organizations claiming federal tax-exempt status must file yearly with the IRS. Nonprofit Explorer has IRS digitized Form 990 data for filings processed in 2012 and later. If this organization filed an amended return, it may not be reflected below. Duplicate download links may indicate a resubmission or amendment to this organization's original return. Form 990 data is from the IRS.
Fiscal Year Ending Dec.
2022
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $2,774,635 |
> 100%
|
| Program Services | $66,768 |
2.4%
|
| Investment Income | $4,672 |
0.2%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$98,290 | |
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $26,250 |
0.9%
|
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $247,902 |
9.9%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $348,019 |
13.9%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $6,830,491 | |
| Total Liabilities | $1,488,211 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Tanya Stevenson (Ceo) | $226,657 | $0 | $21,245 |
| Kleed Cumming (Comm/Tech Manager) | $107,821 | $0 | $547 |
| Jeremy Kelly (Chair) | $0 | $0 | $0 |
Document Links
990
Filed on Nov. 15, 2023Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2021
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $2,409,559 |
> 100%
|
| Program Services | $23,300 |
1.0%
|
| Investment Income | $269 |
0.0%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$49,510 | |
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $237,006 |
15.9%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $313,624 |
21.0%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $5,846,076 | |
| Total Liabilities | $786,638 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Tanya Stevenson (Ceo) | $216,761 | $0 | $20,245 |
| Jeremy Kelly (Chair) | $0 | $0 | $0 |
| Martha Montag Brown (Vice Chair) | $0 | $0 | $0 |
Document Links
990
Filed on Sept. 16, 2022Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2020
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $1,987,042 |
> 100%
|
| Program Services | $26,106 |
1.3%
|
| Investment Income | $6,329 |
0.3%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | -$71,671 | |
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $232,668 |
20.7%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $301,360 |
26.8%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $4,489,179 | |
| Total Liabilities | $322,658 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Tanya Stevenson (Ceo) | $216,456 | $0 | $16,212 |
| Kleed Cumming (Comms. & Tech Mngr) | $101,656 | $0 | $852 |
| Jeremy Kelly (Chair) | $0 | $0 | $0 |
Document Links
990
Filed on Aug. 2, 2021Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2019
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $1,672,633 |
73.6%
|
| Program Services | $75,663 |
3.3%
|
| Investment Income | $16,560 |
0.7%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $507,010 |
22.3%
|
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $244,046 |
10.9%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $282,015 |
12.5%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $3,955,407 | |
| Total Liabilities | $609,043 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Molly White (Ceo) | $224,747 | $0 | $19,299 |
| Leah Hellerstein (Program Director) | $131,178 | $0 | $10,663 |
| Jeremy Kelly (Chairman) | $0 | $0 | $0 |
Document Links
990
Filed on July 2, 2020Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2018
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $2,080,997 |
95.3%
|
| Program Services | $68,225 |
3.1%
|
| Investment Income | $8,449 |
0.4%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $25,957 |
1.2%
|
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $205,820 |
10.2%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $447,736 |
22.1%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $3,794,207 | |
| Total Liabilities | $471,821 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Molly White (Ceo) | $201,660 | $0 | $4,160 |
| Woody Kessel (Chairman) | $0 | $0 | $0 |
| Marsha Dugan (Vice Chairman) | $0 | $0 | $0 |
Document Links
990
Filed on Sept. 20, 2019Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2017
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $3,016,393 |
93.2%
|
| Program Services | $205,789 |
6.4%
|
| Investment Income | $3,092 |
0.1%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $12,582 |
0.4%
|
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $206,040 |
10.3%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $535,614 |
26.8%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $3,288,895 | |
| Total Liabilities | $129,242 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Molly White (Ceo) | $201,991 | $0 | $4,049 |
| Jeremy Kelly (Chairman) | $0 | $0 | $0 |
| Woodie Kessel (Vice Chairman) | $0 | $0 | $0 |
Document Links
990
Filed on Sept. 12, 2018Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2016
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $1,551,282 |
85.9%
|
| Program Services | $206,241 |
11.4%
|
| Investment Income | $1,686 |
0.1%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $46,667 |
2.6%
|
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $203,973 |
10.3%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $638,475 |
32.4%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $2,063,066 | |
| Total Liabilities | $142,312 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Molly White (Ceo) | $201,588 | $0 | $2,385 |
| Jeremy Kelly (Chairman) | $0 | $0 | $0 |
| Woodie Kessel (Vice Chairman) | $0 | $0 | $0 |
Document Links
990
Filed on Aug. 8, 2017Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2015
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $2,113,561 |
98.8%
|
| Program Services | $24,525 |
1.1%
|
| Investment Income | $1,425 |
0.1%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $0 | |
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $205,413 |
15.2%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $412,389 |
30.5%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $2,299,688 | |
| Total Liabilities | $212,483 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Molly White (Ceo) | $195,958 | $0 | $9,455 |
| Jeremy Kelly (Chairman) | $0 | $0 | $0 |
| Woodie Kessel (Vice Chairman) | $0 | $0 | $0 |
Document Links
990
Filed on Sept. 2, 2016Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2014
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $696,805 |
95.8%
|
| Program Services | $28,534 |
3.9%
|
| Investment Income | $2,186 |
0.3%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $0 | |
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $163,300 |
15.0%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $157,166 |
14.4%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $1,642,464 | |
| Total Liabilities | $344,645 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Molly White (Executive Dir.) | $163,300 | $0 | $0 |
| Jeremy Kelly (Chairman) | $0 | $0 | $0 |
| John Brekka (Vice Chairman) | $0 | $0 | $0 |
Document Links
990
Filed on Aug. 27, 2015Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2013
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $1,464,729 |
98.8%
|
| Program Services | $16,180 |
1.1%
|
| Investment Income | $1,457 |
0.1%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $0 | |
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $150,000 |
15.2%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $72,970 |
7.4%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $2,085,873 | |
| Total Liabilities | $427,442 |
Compensation
| Key Employees and Officers | Compensation | Related | Other |
|---|---|---|---|
| Molly White (Executive Direc) | $150,000 | $0 | $0 |
| Woodie Kessel (Board Member) | $0 | $0 | $0 |
| Melvin Kohn (Board Member) | $0 | $0 | $0 |
Document Links
990
Filed on Nov. 12, 2014Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2012
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $726,874 |
98.6%
|
| Program Services | $10,308 |
1.4%
|
| Investment Income | $319 |
0.0%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $0 | |
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $140,625 |
10.7%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $119,234 |
9.1%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $1,699,136 | |
| Total Liabilities | $537,530 |
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2011
Extracted Financial Data
Extracted Financial Data from Form 990
| Notable Sources of Revenue | Percent of Total Revenue | |
|---|---|---|
| Contributions | $1,602,055 |
100.0%
|
| Program Services | $0 | |
| Investment Income | $307 |
0.0%
|
| Bond Proceeds | $0 | |
| Royalties | $0 | |
| Rental Property Income | $0 | |
| Net Fundraising | $0 | |
| Sales of Assets | $0 | |
| Net Inventory Sales | $0 | |
| Other Revenue | $0 |
| Notable Expenses | Percent of Total Expenses | |
|---|---|---|
| Executive Compensation | $83,196 |
11.3%
|
| Professional Fundraising Fees | $0 | |
| Other Salaries and Wages | $47,240 |
6.4%
|
| Assets/Debt | ||
|---|---|---|
| Total Assets | $1,890,239 | |
| Total Liabilities | $153,769 |
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2010
No Extracted Financial Data
Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2009
No Extracted Financial Data
Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.
Document Links
990-EZ
Short form tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2008
No Extracted Financial Data
Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.
Document Links
990-EZ
Short form tax return for a nonprofit’s activities, finances, and governance
Fiscal Year Ending Dec.
2007
No Extracted Financial Data
Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.
Document Links
990
Primary tax return for a nonprofit’s activities, finances, and governance
About This Data
Nonprofit Explorer includes summary data for nonprofit tax returns and full Form 990 documents, in both PDF and digital formats.
The summary data contains information processed by the IRS during the 2012-2019 calendar years; this generally consists of filings for the 2011-2018 fiscal years, but may include older records. This data release includes only a subset of what can be found in the full Form 990s.
In addition to the raw summary data, we link to PDFs and digital copies of full Form 990 documents wherever possible. This consists of separate releases by the IRS of Form 990 documents processed by the agency, which we update regularly.
We also link to copies of audits nonprofit organizations that spent $750,000 or more in Federal grant money in a single fiscal year since 2016. These audits are copied from the Federal Audit Clearinghouse.