Myotonic Dystrophy Foundation Inc
To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$5.8M
+6.6% YoY
Annual Giving
$848K
+21.1% YoY
Grant Count
9
+28.6% YoY
Avg Grant Size
$94K
-5.8% YoY
About Myotonic Dystrophy Foundation Inc
Based on IRS filings
Myotonic Dystrophy Foundation Inc is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in OAKLAND, CA. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $5.8M in total assets. In 2024, it awarded 9 grants totaling $848K. Net investment income was $200K.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $5,826,049 | $5,467,413 | $6,830,491 |
| Revenue | $3,659,795 | $2,448,480 | $2,774,035 |
| Expenses | $3,754,033 | $3,791,128 | $2,506,145 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $199,813 | $183,627 | $4,672 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 9 recipients in 2024
Grant Size Distribution
31 grants across all recorded years
Giving History
Grant recipients and amounts by year
Among its reported 2024 grants, the largest include University of Utah ($190,000), University of Nevada ($145,000), University of Florida ($105,000).
| Recipient | Purpose | Amount |
|---|---|---|
| MASSACHUSETTS GENERAL BOSTON, MA | RESEARCH | $50,000 |
| UNIVERSITY OF FLORIDA GAINESVILLE, FL | RESEARCH | $105,000 |
| UNIVERSITY OF ILLINOIS URBANA, IL | RESEARCH | $105,000 |
| UNIVERSITY OF NEVADA LAS VEGAS, NV | RESEARCH | $145,000 |
| UNIVERSITY OF UTAH SALT LAKE CITY, UT | RESEARCH | $190,000 |
| UNIVERSITY OF WASHINGTON SEATTLE, WA | RESEARCH | $50,000 |
| UNVERSITY OF ALBANY ALBANY, NY | RESEARCH | $105,000 |
| VIRGINIA COMMONWEALTH UNIVERS RICHMOND, VA | RESEARCH | $42,600 |
| WAKE FOREST UNIVERSITY WINSTONSALEM, NC | — | $55,000 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| TANYA STEVENSON | CEO | 60 | $247,799 |
| ANDREAS ROHRWASSER | CHIEF SCI. OFFICER | 40 | $197,755 |
| KLEED CUMMING | COMM/TECH MANAGER | 40 | $131,723 |
| MINDY BUCHANAN | DIR. OF PROGRAMS | 40 | $127,061 |
| JEREMY KELLY | CHAIR | 5 | — |
| MARTHA MONTAG BROWN | VICE-CHAIR | 5 | — |
| ELIZABETH FLORENCE | Secretary | 5 | — |
| DAVID HERBERT | Treasurer | 5 | — |
| DAVID BERMAN | Director | 1 | — |
| JOHN W DAY | Director | 1 | — |
| CHARLES THORNTON | Director | 1 | — |
| ROBERT CAMPAGNA | Director | 1 | — |
| ANDREW BERGLUND | Director | 1 | — |
| TOM McPeek | Director | 1 | — |
| BELEN ESPARIS | Director | 1 | — |
| HALEY MARTINELLI | Director | 1 | — |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is Myotonic Dystrophy Foundation Inc?
Myotonic Dystrophy Foundation Inc is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in OAKLAND, CA. It holds $5.8M in total assets as of 2024.
How large is Myotonic Dystrophy Foundation Inc?
As of 2024, Myotonic Dystrophy Foundation Inc holds $5.8M in total assets with $3.7M in annual revenue. It awarded 9 grants totaling $848K in 2024.
Where does Myotonic Dystrophy Foundation Inc operate?
Myotonic Dystrophy Foundation Inc has awarded grants in California, Florida, Georgia, Illinois, Massachusetts, Missouri, North Carolina, Nevada, New York, Texas, Utah, Virginia, Washington.
What size grants does Myotonic Dystrophy Foundation Inc award?
In 2024, Myotonic Dystrophy Foundation Inc awarded 9 grants totaling $848K — an average of about $94K per grant, based on its IRS Form 990 filings.
What is Myotonic Dystrophy Foundation Inc's EIN?
Myotonic Dystrophy Foundation Inc's EIN (Employer Identification Number) is 20-5014628. IRS Form 990 filing data is available on this page for 2020–2024.
Explore Open Grants
Browse active grant opportunities in Myotonic Dystrophy Foundation Inc's focus areas in our free grants database
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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