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Organizations Diseases, Disorders & Medical Myotonic Dystrophy Foundation Inc.

Myotonic Dystrophy Foundation Inc.

Fiscal year ending 2024. Filed on November 4, 2025.

663 Thirteenth Street Suite 100
Oakland, California 94612

Myotonic Dystrophy Foundation Inc. (EIN: 20-5014628) has filed an IRS Form 990 since at least fiscal year 2016. In its fiscal year 2024 IRS Form 990 filing, Myotonic Dystrophy Foundation Inc., a 501(c)(3) charitable organization, reported compensation for 4 out of 14 total employees. Among the employees shown here, the average compensation is $181,585. The highest compensated employee at Myotonic Dystrophy Foundation Inc. is Tanya Stevenson with fiscal year 2024 compensation of $257,057.

Revenue, expenses, and employee compensation

Revenue

$3,659,795

Expenses

$3,754,033

Employee compensation

$1,572,229
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Tanya Stevenson
Chief Executive Officer
$257,057
$247,799 No related comp$9,258
Andreas Rohrwasser
Chief SCI Officer
$205,555
$197,755 No related comp$7,800
Kleed Cumming
Comm/Tech Manager
$136,667
$131,723 No related comp$4,944
Mindy Buchanan
Programs Director
$127,061
$127,061 No related compNo other comp

Benchmark Employee Compensation

Non-Employee Board Members

Andrew Berglund
Director
Belen Esparis
Director
Charles Thornton
Director
David Berman
Director
David Herbert
Treasurer
Elizabeth Florence
Secretary
Haley Martinelli
Director
Jeremy Kelly
Chair
John W Day
Director
Martha Montag Brown
Vice Chair
Robert Campagna
Director
Tom McPeek
Director

Mission Statement

To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.

Revisions to this organization profile

November 4, 2025:
2024 Myotonic Dystrophy Foundation Inc. 990 filed
November 14, 2024:
2023 Myotonic Dystrophy Foundation Inc. 990 filed
November 15, 2023:
2022 Myotonic Dystrophy Foundation Inc. 990 filed

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