Nonprofit · EIN 20-5014628
MYOTONIC DYSTROPHY FOUNDATION
Tax-exempt · OAKLAND, CA 94612
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990 | $3,659,795 | $3,754,033 | -$94,238 | $5,826,049 | $1,917,906 | $3,908,143 |
| December 31, 2023 | 990 | $2,448,480 | $3,791,128 | -$1,342,648 | $5,467,413 | $1,465,481 | $4,001,932 |
Financial details: 990 for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $3,637,697
- Program service revenue
- $1,624
- Investment income
- $199,813
- Net gain from sales of assets
- -$47
- Net income from fundraising events
- -$179,339
- Other revenue
- -$179,339
Expenses
- Grants and similar amounts paid
- $1,008,046
- Compensation of officers, directors and key employees
- $257,057
- Other salaries and wages
- $1,136,135
- Salaries, compensation and benefits (total)
- $1,572,229
- Professional fundraising fees
- $0
- Accounting fees
- $17,280
- Occupancy
- $33,582
- Program services (functional)
- $3,293,629
- Management and general (functional)
- $204,080
- Fundraising (functional)
- $256,324
Balance sheet and other
- Total assets, start of year
- $5,467,413
- Total assets, end of year
- $5,826,049
- Total liabilities, end of year
- $1,917,906
- Net assets, end of year
- $3,908,143
- Net assets without donor restrictions
- $3,908,143
- Gross receipts
- $3,923,920
- Employees
- 14
- Volunteers
- 90
- Year formed
- 2006
- State of legal domicile
- CA
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2024, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| TANYA STEVENSON | CEO Officer | 60 | $247,799 | $9,258 |
| ANDREAS ROHRWASSER | CHIEF SCI. OFFICER | 40 | $197,755 | $7,800 |
| KLEED CUMMING | COMM/TECH MANAGER | 40 | $131,723 | $4,944 |
| MINDY BUCHANAN | DIR. OF PROGRAMS | 40 | $127,061 | $0 |
| JEREMY KELLY | CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| MARTHA MONTAG BROWN | VICE-CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| ELIZABETH FLORENCE | Secretary Trustee or director, Officer | 5 | $0 | $0 |
| DAVID HERBERT | Treasurer Trustee or director, Officer | 5 | $0 | $0 |
| DAVID BERMAN | Director Trustee or director | 1 | $0 | $0 |
| JOHN W DAY | Director Trustee or director | 1 | $0 | $0 |
| CHARLES THORNTON | Director Trustee or director | 1 | $0 | $0 |
| ROBERT CAMPAGNA | Director Trustee or director | 1 | $0 | $0 |
| ANDREW BERGLUND | Director Trustee or director | 1 | $0 | $0 |
| TOM McPeek | Director Trustee or director | 1 | $0 | $0 |
| BELEN ESPARIS | Director Trustee or director | 1 | $0 | $0 |
1 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| HALEY MARTINELLI | Director Trustee or director | 1 | $0 |
990 for the year ended December 31, 2023: 16 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| TANYA STEVENSON | CEO Officer | 60 | $240,871 | $23,477 |
| KLEED CUMMING | COMM/TECH MANAGER | 40 | $131,861 | $942 |
| CATHERINE BECK | PROJECTS MANAGER | 40 | $126,798 | $2,397 |
| MINDY BUCHANAN | DIR. OF PROGRAMS | 40 | $108,620 | $2,301 |
| JEREMY KELLY | CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| MARTHA MONTAG BROWN | VICE-CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| ELIZABETH FLORENCE | Secretary Trustee or director, Officer | 5 | $0 | $0 |
| DAVID HERBERT | Treasurer Trustee or director, Officer | 5 | $0 | $0 |
| DAVID BERMAN | Director Trustee or director | 1 | $0 | $0 |
| JOHN W DAY | Director Trustee or director | 1 | $0 | $0 |
| CHARLES THORNTON | Director Trustee or director | 1 | $0 | $0 |
| JOHN FITZPATRICK | Director Trustee or director | 1 | $0 | $0 |
| JOEL REVILL | Director Trustee or director | 1 | $0 | $0 |
| TOM McPeek | Director Trustee or director | 1 | $0 | $0 |
| BELEN ESPARIS | Director Trustee or director | 2 | $0 | $0 |
| HALEY MARTINELLI | Director Trustee or director | 1 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 663 13TH ST STE 100, OAKLAND, CA 94612-1274
- Principal officer (990 for 2024)
- TANYA STEVENSON, 663 THIRTEENTH STREET SUITE 100, OAKLAND, CA 94612
- Signed the 990
- TANYA STEVENSON, CEO
- Phone
- (415) 800-7745
- Website
- WWW.MYOTONIC.ORG
- Return prepared by
- PROPP CHRISTENSEN CANIGLIA LLP
California records
California keeps its own records of charities and corporations. Search them by EIN 20-5014628 or by the name MYOTONIC DYSTROPHY FOUNDATION.
- Attorney General, Registry of Charities and Fundraisers
- Registration status and filed reports (CT-TR-1, RRF-1)
- Secretary of State, bizfile Online
- Corporation status, entity number, agent for service
- Franchise Tax Board
- Entity status letter (state tax exemption, good standing)
Mission
To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.
Program accomplishments
- 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.Expenses $1,664,747 · grants $1,008,046
- 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.Expenses $1,289,926 · revenue $1,624
- 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.Expenses $338,956
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | Not on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 20-5014628
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2007
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G40)
- Assets (IRS master file)
- $5,826,049
- Income (IRS master file)
- $3,923,920
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2024 | $3,659,795 | $3,754,033 | $5,826,049 | IRS |
| 990 | December 2023 | $2,448,480 | $3,791,128 | $5,467,413 | XML |
| 990 | December 2022 | $2,774,035 | $2,506,145 | $6,830,491 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 20-5014628).
Questions about MYOTONIC DYSTROPHY FOUNDATION
- What is the EIN of MYOTONIC DYSTROPHY FOUNDATION?
- The employer identification number (EIN) of MYOTONIC DYSTROPHY FOUNDATION is 20-5014628.
- Is MYOTONIC DYSTROPHY FOUNDATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2007.
- Are donations to MYOTONIC DYSTROPHY FOUNDATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does MYOTONIC DYSTROPHY FOUNDATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of MYOTONIC DYSTROPHY FOUNDATION due?
- The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did MYOTONIC DYSTROPHY FOUNDATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2024.
- Who is the principal officer of MYOTONIC DYSTROPHY FOUNDATION?
- The 990 for the year ended December 31, 2024 names TANYA STEVENSON.
- Who are the officers and directors of MYOTONIC DYSTROPHY FOUNDATION?
- The 990 for the year ended December 31, 2024 lists 16 people; 4 received compensation from the organization, the highest $247,799 (TANYA STEVENSON, CEO).
- How much revenue does MYOTONIC DYSTROPHY FOUNDATION have?
- On its 990 for the year ended December 31, 2024 it reported revenue of $3,659,795, expenses of $3,754,033 and total assets of $5,826,049 at year end.
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All nonprofits in OAKLAND · California · Voluntary health associations and medical disciplines