Dystonia Medical Research Foundation
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.
Dystonia Medical Research Foundation at a glance
In short: Dystonia Medical Research Foundation gave $795K across 9 grants in 2025 (avg $88K), top state North Carolina. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $794,689
- +12.0% vs 2024
- Grants made (2025)
- 9
- +28.6% vs 2024
- Average grant
- $88,299
- -12.9% vs 2024
- Median grant
- $91,956
- Total assets
- $7,080,944
- +10.3% vs 2024
- Primary geography
- North Carolina (20% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who Dystonia Medical Research Foundation funds
How this funder distributes its grants
Top Recipients
Top 9 recipients in 2025
The largest 2025 recipient was Duke University Medical Ctr ($157K). Together the top 9 received $795K.
Grant Size Distribution
43 grants across all recorded years
The most common grant size was in the $50–100K range: 30 grants of 43 (70%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 9 itemized grants.
States
Cities
How Dystonia Medical Research Foundation gives
- Giving held roughly steady from 2022 to 2025 (+11%). Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $374K (2020) to $795K (2025). In 2025 it made 9 grants totaling $795K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Duke University Medical Ctr Durham, NC | medical research | $156,957 |
| Univ of Alabama Birmingham Birmingham, AL | medical research | $91,957 |
| Yale University New Haven, CT | medical research | $91,957 |
| University of Pittsburgh Pittsburgh, PA | medical research | $91,956 |
| Virginia Polytechnic Blocksburg, VA | medical research | $91,956 |
| Childrens Hospital Corp Boston, MA | medical research | $75,000 |
| University of California SF San Francisco, CA | medical research | $75,000 |
| University of Michigan Ann Arbor, MI | medical research | $72,597 |
| Emory University Atlanta, GA | medical research | $47,309 |
Ready to take the next step with Dystonia Medical Research Foundation?
Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $7,080,944 | $3,654,855 | $3,242,781 | $794,689 | 9 | $190,283 |
| 2024 | $6,422,430 | $3,214,752 | $2,959,323 | $709,392 | 7 | $327,960 |
| 2023 | $6,443,694 | $2,986,859 | $3,393,987 | $610,524 | 9 | $55,844 |
| 2022 | $6,256,038 | $2,569,110 | $2,496,291 | $715,878 | 9 | $133,079 |
| 2021 | $6,898,919 | $2,942,734 | $2,472,524 | $497,808 | 9 | $133,597 |
| 2020 | $6,071,766 | $2,515,900 | $2,250,219 | $373,782 | 7 | $93,731 |
About Dystonia Medical Research Foundation
Based on IRS filings
Dystonia Medical Research Foundation is a public charity focused on Medical Research, based in Chicago, IL. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $7.1M in total assets. In 2025, it awarded 9 grants totaling $795K. Net investment income was $190K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Dystonia Medical Research Foundation is led by Janet Hieshetter, Secretary & Executive Director on every filing since 2020; 4 of 31 officers listed in 2025 are compensated.
Officers on the 2025 filing
Janet Hieshetter
Secretary & Executive Director
On filings since 2020
59 hrs/week
$144K (2020) → $188K (2025)
Mark Rudolph
President
Treasurer → President, 2022
On filings since 2020
5 hrs/week
No compensation reported
Jennifer McNabola
Director Finance
Director of Finance → Director Finance, 2022
On filings since 2021
30 hrs/week
$96K (2021) → $96K (2025)
Katharine Riddle
Assc Director Development
New on the 2025 filing
38 hrs/week
$89K (2025)
Robyn Kurth
Director Communications
New on the 2025 filing
38 hrs/week
$141K (2025)
Allison London
Director
On filings since 2020
1 hr/week
No compensation reported
Bill McLaughlin
Director
On filings since 2020
1 hr/week
No compensation reported
Dennis Kessler
Director
On filings since 2020
1 hr/week
No compensation reported
Diane Rudolph
Director
On filings since 2020
1 hr/week
No compensation reported
Erwin Jackson
Director
On filings since 2020
1 hr/week
No compensation reported
Frances Belzberg
Director
On filings since 2020
1 hr/week
No compensation reported
Joel Perlmutter MD
Scientific Director
On filings since 2020
3 hrs/week
No compensation reported
Jon Davis
Director
On filings since 2020
1 hr/week
No compensation reported
Liz Rawson
Director
On filings since 2020
1 hr/week
No compensation reported
Marilynne Herbert
Director
On filings since 2020
1 hr/week
No compensation reported
Rosalie Lewis
Director
On filings since 2020
1 hr/week
No compensation reported
Sandra Weil
Director
On filings since 2020
1 hr/week
No compensation reported
Stefanie Jackson
Director
On filings since 2020
1 hr/week
No compensation reported
Brian Keane
Director
On filings since 2021
1 hr/week
No compensation reported
Art Kessler
Director
On filings since 2022
1 hr/week
No compensation reported
Dan Lewis
Director
On filings since 2022
1 hr/week
No compensation reported
Marc Miller
Director
On filings since 2022
1 hr/week
No compensation reported
Robin Miller
Director
On filings since 2022
1 hr/week
No compensation reported
Chris Von Der Ahe
Director
On filings since 2024
1 hr/week
No compensation reported
Barbara Kessler
Vice President
On filings since 2020
2 hrs/week
No compensation reported
Carole Rawson
Vice President
On filings since 2020
2 hrs/week
No compensation reported
John Downey
Treasurer
Director → Treasurer, 2022
On filings since 2020
3 hrs/week
No compensation reported
Karen Ross
Vice President
On filings since 2020
2 hrs/week
No compensation reported
Paula Schneider
Vice President
Director → Vice President, 2022
On filings since 2020
2 hrs/week
No compensation reported
Richard Lewis
Vice President
On filings since 2020
2 hrs/week
No compensation reported
Ron Hersh
Vice President
On filings since 2020
3 hrs/week
No compensation reported
Former officers (6)
- Former: Deborah Durrer (2020–2024) — Director Development
- Former: Donna Driscoll (2020–2023) — Director
- Former: Pamela Sloate (2020–2022) — Director
- Former: Jessica Feeley (2021–2022) — Director Communications & Educ
- Former: Arthur Kessler (2020–2021) — President
- Former: Jan Teller (2020) — Chief Sci Advisor
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $188K, to Janet Hieshetter (Sec/EXEC DIR). 4 officers or directors reported compensation on that filing.
Frequently asked questions about Dystonia Medical Research Foundation
How much does Dystonia Medical Research Foundation give each year?
Dystonia Medical Research Foundation gave $795K across 9 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $709K across 7 grants.
What is Dystonia Medical Research Foundation's typical grant size?
Dystonia Medical Research Foundation's median grant in 2025 was $91,956, and its average grant was $88,299, across 9 grants on its 2025 IRS Form 990.
Where does Dystonia Medical Research Foundation give grants?
Dystonia Medical Research Foundation's top state is North Carolina, with 20% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were Alabama (12%) and Connecticut (12%).
Does Dystonia Medical Research Foundation give general operating support?
Not in 2025: none of the 9 grants with a stated purpose on Dystonia Medical Research Foundation's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "Medical Research" (9 grants).
Who are Dystonia Medical Research Foundation's largest grantees?
Dystonia Medical Research Foundation's largest 2025 grantees include Duke University Medical Ctr ($156,957), Univ of Alabama Birmingham ($91,957) and Yale University ($91,957), according to its 2025 IRS Form 990. Together they received 43% of its itemized 2025 grant dollars.
How large is Dystonia Medical Research Foundation?
Dystonia Medical Research Foundation reported $7.1M in total assets on its 2025 IRS Form 990. Its revenue that year was $3.7M.
What is Dystonia Medical Research Foundation?
Dystonia Medical Research Foundation is a public charity focused on Medical Research, based in Chicago, IL. It holds $7.1M in total assets as of 2025.
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 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS September 1, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS August 25, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS August 23, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS August 22, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS August 12, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS August 17, 2026)
- IRS filings on file for fiscal years 2020–2024
Explore Open Grants
Browse active grant opportunities in Dystonia Medical Research Foundation's focus areas in our free grants database
Similar Funders
Funders that support many of the same organizations
American Academy of Sleep Medicine Foundation
Darien, IL
The Foundation funds sleep-health research, investigator career development and training, community programs, and disaster relief for sleep centers. Its 2024 grants ranged from about $10,000 to $540,000, with a median of $100,000; no geographic focus is stated. It accepts letters of intent for its Strategic Research Grant, with full applications by invitation.
Assets
$18.2M
Grants
23
Total Given
$3.7M
Brightfocus Foundation
Clarksburg, MD
BrightFocus Foundation funds basic, translational, and clinical research on Alzheimer’s disease, macular degeneration, and glaucoma, including innovative and early-stage projects, worldwide. Its 2025 grants ranged from $15,240 to $409,500, with a median of $200,000. It accepts applications through online program opportunities and Requests for Proposals.
Assets
$65.1M
Grants
57
Total Given
$13.3M
National Alliance for Research on Schizophrenia and Depression
New York, NY
The Brain & Behavior Research Foundation funds scientific research into the causes, treatment, and prevention of serious mental illnesses, including schizophrenia, depression, anxiety, and bipolar disorder. Its 2024 grants had a median of about $70,000 and supported research institutions across multiple U.S. states; the Young Investigator program is explicitly U.S.-based. Applicants use award-specific application processes, but the profile does not state whether unsolicited requests are accepted.
Assets
$62.4M
Grants
80
Total Given
$8.4M
American Lung Association
Chicago, IL
The American Lung Association funds research on lung disease, lung cancer, tobacco use, and air quality, primarily through defined research-award programs for investigators at eligible U.S. nonprofit institutions. Recent grants ranged from $25,000 to $825,000, with a median of about $201,000; applications are submitted through specified award mechanisms, and the profile does not state whether unsolicited requests are accepted.
Assets
$225.7M
Grants
51
Total Given
$13.5M
Breakthrough T1D
New York, NY
Breakthrough T1D funds research to cure, prevent, and treat type 1 diabetes and its complications, as well as related education and support. Its 2025 grants ranged from $25,000 to $7.28 million, with a median of about $378,000, and went to organizations in multiple states; eligible Conference Award applications are accepted year-round.
Assets
$534.6M
Grants
100
Total Given
$79.3M
Benaroya Research Institute at Virginia
Seattle, WA
Benaroya Research Institute funds research on immune-system health and disease, including autoimmunity, allergies, asthma, and cancer, primarily through grants to research and medical institutions. Its 2025 grants had a median of about $105,000, with awards ranging from $5,419 to $10.7 million, and went to organizations across the U.S., with the largest share of funding going to California. The profile does not state whether it accepts unsolicited requests.
Assets
$95.5M
Grants
66
Total Given
$27.5M
More similar funders
More Funders in Illinois
The filing figures on this page are open data under CC BY 4.0. About GrantGraph Open
Figures come from Dystonia Medical Research Foundation's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
Dystonia Medical Research Foundation down — hundreds of funders to go?