THE FOUNDATION HAS THREE MAIN PURPOSES: (1)TO ADVANCE DYSTONIA RESEARCH BY AWARDING GRANTS TO BASIC, TRANSLATIONAL, AND CLINICAL INVESTIGATORS AND TO MEDICAL/SCIENTIFIC INSTITUTIONS COMMITTED TO FINDING THE CAUSE AND CURE FOR ALL FORMS OF DYSTONIA; (2)TO PROMOTE DYSTONIA AWARENESS BY SPONSORING WORKSHOPS AND SYMPOSIUMS FOR MEDICAL PROFESSIONALS AND PATIENTS, BY EDUCATING MEMBERS OF CONGRESS ABOUT DYSTONIA AND THE NEEDS OF THE DYSTONIA COMMUNITY, BY ADVOCATING FOR THOSE AFFECTED BY DYSTONIA AND THEIR FAMILIES, AND BY PRODUCING AND DISTRIBUTING EDUCATIONAL MATERIALS, BOTH PRINTED AND ELECTRONIC; AND (3)TO SPONSOR DYSTONIA PATIENT AND FAMILY SUPPORT GROUPS AND EDUCATION PROGRAMS INCLUDING THE CREATION AND PROMOTION OF VIRTUAL EDUCATION MEETINGS AND ELECTRONIC SOCIAL NETWORKS FOR DYSTONIA-AFFECTED PERSONS AND FAMILIES WHO ARE UNABLE TO ATTEND MEETINGS.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$6.4M
-0.3% YoY
Annual Giving
$709K
+16.2% YoY
Grant Count
7
-22.2% YoY
Avg Grant Size
$101K
+49.4% YoY
About Dystonia Medical Research Foundation
Based on IRS filings
Dystonia Medical Research Foundation is a nonprofit organization focused on Medical Research, based in CHICAGO, IL. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $6.4M in total assets. In 2024, it awarded 7 grants totaling $709K. Net investment income was $328K.
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 | $6,422,430 | $6,443,694 | $6,256,038 |
| Revenue | $3,214,752 | $2,986,859 | $2,569,110 |
| Expenses | $2,959,323 | $3,393,987 | $2,496,291 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $327,960 | $55,844 | $133,079 |
| 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 7 recipients in 2024
Grant Size Distribution
41 grants across all recorded years
Giving History
Grant recipients and amounts by year
Among its reported 2024 grants, the largest include Yale University ($181,091), Duke University Medical Ctr ($155,545), University of California SF ($99,978).
| Recipient | Purpose | Amount |
|---|---|---|
| Baylor College of Medicine Houston, TX | medical research | $66,718 |
| Duke University Medical Ctr Durham, NC | medical research | $155,545 |
| Emory University Atlanta, GA | medical research | $50,515 |
| Icahn Schl of Med at Mt Sinai New York, NY | medical research | $65,000 |
| University of California SF San Francisco, CA | medical research | $99,978 |
| VIRGINIA POLYTECHNIC BLOCKSBURG, VA | medical research | $90,545 |
| Yale University New Haven, CT | medical research | $181,091 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| JANET HIESHETTER | Sec/EXEC DIR | 59 | $183,898 |
| DEBORAH DURRER | DIR DEVELOPMENT | 38 | $96,599 |
| JENNIFER MCNABOLA | DIR FINANCE | 30 | $95,167 |
| MARK RUDOLPH | President | 5 | — |
| JOHN DOWNEY | Treasurer | 3 | — |
| RICHARD LEWIS | Vice President | 2 | — |
| BARBARA KESSLER | Vice President | 2 | — |
| KAREN ROSS | Vice President | 2 | — |
| CAROLE RAWSON | Vice President | 2 | — |
| PAULA SCHNEIDER | Vice President | 2 | — |
| Ron Hersh | Vice President | 3 | — |
| Allison London | Director | 1 | — |
| FRANCES BELZBERG | Director | 1 | — |
| MARILYNNE HERBERT | Director | 1 | — |
| STEFANIE JACKSON | Director | 1 | — |
| DIANE RUDOLPH | Director | 1 | — |
| JOEL PERLMUTTER MD | Scientific Dir | 3 | — |
| ERWIN JACKSON | Director | 1 | — |
| BILL MCLAUGHLIN | Director | 1 | — |
| Art Kessler | Director | 1 | — |
| SANDRA WEIL | Director | 1 | — |
| ROSALIE LEWIS | Director | 1 | — |
| Jon Davis | Director | 1 | — |
| Dennis Kessler | Director | 1 | — |
| LIZ RAWSON | Director | 1 | — |
| Chris Von Der Ahe | Director | 1 | — |
| BRIAN KEANE | Director | 1 | — |
| Marc Miller | Director | 1 | — |
| Robin Miller | Director | 1 | — |
| DAN LEWIS | Director | 1 | — |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is Dystonia Medical Research Foundation?
Dystonia Medical Research Foundation is a nonprofit organization focused on Medical Research, based in CHICAGO, IL. It holds $6.4M in total assets as of 2024.
How large is Dystonia Medical Research Foundation?
As of 2024, Dystonia Medical Research Foundation holds $6.4M in total assets with $3.2M in annual revenue. It awarded 7 grants totaling $709K in 2024.
Where does Dystonia Medical Research Foundation operate?
Dystonia Medical Research Foundation has awarded grants in Alabama, California, Connecticut, Florida, Georgia, Illinois, Massachusetts, Michigan, Missouri, North Carolina, New York, Ohio, Tennessee, Texas, Virginia.
What size grants does Dystonia Medical Research Foundation award?
In 2024, Dystonia Medical Research Foundation awarded 7 grants totaling $709K — an average of about $101K per grant, based on its IRS Form 990 filings.
What is Dystonia Medical Research Foundation's EIN?
Dystonia Medical Research Foundation's EIN (Employer Identification Number) is 95-3378526. IRS Form 990 filing data is available on this page for 2020–2024.
Explore Open Grants
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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