Illinois · Nonprofit
DYSTONIA MEDICAL RESEARCH FOUNDATION
DYSTONIA MEDICAL RESEARCH FOUNDATION (Illinois) receives grants from 94 organizations whose IRS filings report $6,985,659 to it, the largest being Emory University ($1,588,999). 53 of them have funded it in more than one year.
- Revenue FY2025
- $3.7M
- Funders on record
- 94
- Grants received
- $7.0M
- Net assets
- $6.0M
What Dystonia Medical Research Foundation does
Mission
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.
As stated on its FY2025 Form 990.
Programs
PROGRAM: SCIENCEISSUING 3 REQUESTS FOR APPLICATIONS FOR SCIENTIFIC RESEARCH; MANAGING THE PEER REVIEW PROCESS OF 23 SUBMITTED GRANT RESEARCH FELLOWSHIP AND CLINICAL FELLOWSHIP APPLICATIONS; SELECTING, FUNDING AND MANAGING 8 RESEARCH GRANTS, 2 RESEARCH FELLOWSHIPS AND 3 CLINICAL FELLOWSHIPs, ALL AIMED AT CREATING A BETTER UNDERSTANDING OF THE PATHOPHYSIOLOGY OF DYSTONIA, IDENTIFYING AND MODIFYING CARRIER GENES, AND DEVELOPING IMPROVED TREATMENTS AND ULTIMATELY A CURE FOR DYSTONIA; ANDMEETING WITH PHARMACOLOGICAL AND BIOTECH COMPANIES TO ENGAGE THEM IN THE DEVELOPMENTOF TREATMENTS FOR DYSTONIA; ANDPLANNING AND SPONSORING THE SAMUEL BELZBERG 7TH INTERNATIONAL DYSTONIA SYMPOSIUM IN APRIL 2027; ANDCONTINUED FUNDING OF A CLINICAL FELLOWSHIP PROGRAM DESIGNED TO SUPPORT TRAINING OF PHYSICIANS IN PREPARATION FOR A CLINICAL AND/OR RESEARCH CAREER IN MOVEMENT DISORDERS WITH SPECIAL FOCUS ON DYSTONIA; ANDSPONSORING AND PARTICIPATING IN DOMESTIC AND INTERNATIONAL SCIENTIFIC MEETINGS INCLUDING THE INTERNATIONAL ASSOCIATION OF PARKINSONISM AND RELATED DISORDERS; INTERNATIONAL ANNUAL CONGRESS OF PARKINSON'S DISEASE AND MOVEMENT DISORDERS; AND TWO WORKSHOPS: "MECHANISMS OF REDUCED PENETRANCE IN…
$1,789,379 spentof which $1,130,358 as grants67% of program spendingProgram: awareness and educationpublishing the "dystonia dialogue" both in print and digital news magazine three times a year under the direction of the volunteer editorial board and distributing it via mail or electronic copy to over 55,000 patients, families, and interested persons to inform them of the latest research and foundation activities; andcreating and disseminating over twenty-nine dystonia related educational resources as well as promoting and distributing a children's book about dystonia to requesting individuals to educate them about the various forms of dystonia and treatment options; andhosting a comprehensive website, webinars, and electronic social networks such as the online dystonia bulletin board, x, facebook, and youtube educational resources postings to provide easy access to information for affected persons and their families; andcreating and disseminating a monthly electronic newsletter and periodic email alerts to share current information on dystonia related events, news, and activities; andcreating and disseminating a dystonia awareness program designed to empower people to share their personal stories and increase the public's awareness of dystonia;…
$648,678 spent24% of program spendingProgram: membership and supportplanning and supporting virtual community forums attended by patients and their families which provide information about current research and treatment options and an opportunity to develop personal networks and reduce isolation for those affected by dystonia; andcreating virtual educational forums for dystonia-affected persons and their families; and promoting support resources to aid in disease management and quality of life such as a network of support groups and an electronic social network, including bulletin boards and telephone communications with individuals affected by dystonia and other interested parties; andmanaging 53 support groups and forums in communities across the country as an enduring resource for those affected by dystonia and their families; providing ongoing leadership training and networking for volunteer support leaders by creating electronic forums for leaders to share experiences and provide peer support, providing webinar training and ongoing support for support leaders, and distributing a support group manual which provides valuble information and resources for effective support leadership (150 support group meetings were…
$131,724 spent5% of program spendingProgram: advocacy the dmrf provides the staff and administrative support for the dystonia advocacy network, a collaboration of four dystonia organizations working to meet the policy needs of the dystonia community. For the past nineteen years, the dystonia advocacy network has been instrumental in educating congress about the benefits of listing dystonia as a condition eligible for study on the department of defense (dod) peer-reviewed medical research program (prmrp), thus making the condition eligible for investigators to compete for research funding. $33 million has been awarded on dystonia research through the dod prmrp program. On behalf of the four dystonia advocacy network organizations, the dmrf engages a legislative consultant to track legislative activities on capitol hill, and electronically disseminates action alerts to stay connected with key legislators. The dmrf also supports a nationwide network of volunteer advocates who continually work to educate members of congress about dystonia and advance the community's legislative agenda. Volunteers meet with policymakers as needed throughout the year to advocate on behalf of the dystonia community on issues such as…
$81,728 spent3% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $2,651,509.
The organization over time
Each line starts at 100 in 2018, so what you read is the shape rather than the size: 150 means half as much again as 2018, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2020 to 2021, from $6.1M to $6.9M (+14%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2020 6% · 2021 5%. Grants only. Government contracts and fees sit inside program revenue.
94% of DYSTONIA MEDICAL RESEARCH FOUNDATION’s revenue is contributions — more reliant on donations than three-quarters of its peers (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Janet Hieshetter
Sec/exec dir
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 22 funders to 47 funders, grant income rose $850k → $977k.
22 of 94 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 24% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of DYSTONIA MEDICAL RESEARCH FOUNDATION’s funders (the co-funder graph). Top 30 of 94 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
DYSTONIA MEDICAL RESEARCH FOUNDATION has a broad base — no single funder exceeds 23% of grant income, and it takes 4 funders to reach half.
the vertical line marks half of all grant income — 4 funders to its left
62% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund DYSTONIA MEDICAL RESEARCH FOUNDATION.
Largest funder’s share by year: 2017 42% · 2018 21% · 2019 30% · 2020 31% · 2021 44% · 2022 25% · 2023 54% — growing more concentrated.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
53% of DYSTONIA MEDICAL RESEARCH FOUNDATION's funders are still giving 3 years after their first grant; 56% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
DYSTONIA MEDICAL RESEARCH FOUNDATION draws 76% of its grant income from funders outside Illinois, across 23 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $1.6M arriving through sponsors registered in 15 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
DYSTONIA MEDICAL RESEARCH FOUNDATION runs a healthier operating margin than half of the 5,002 health nonprofits its size.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Organizations like DYSTONIA MEDICAL RESEARCH FOUNDATION
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Illinois
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
82% of spending goes to programs.
Governance
Public support
90%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 34 states
Screen this organization
A dated, signed PDF of the compliance screen for DYSTONIA MEDICAL RESEARCH FOUNDATION: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds DYSTONIA MEDICAL RESEARCH FOUNDATION?
- DYSTONIA MEDICAL RESEARCH FOUNDATION (Illinois) receives grants from 94 organizations whose IRS filings report $6,985,659 to it, the largest being Emory University ($1,588,999). 53 of them have funded it in more than one year.
- How many funders does DYSTONIA MEDICAL RESEARCH FOUNDATION have?
- IRS filings report 94 organizations giving $6,985,659 in grants to DYSTONIA MEDICAL RESEARCH FOUNDATION, 53 of which have funded it in more than one year.
- Who is the largest funder of DYSTONIA MEDICAL RESEARCH FOUNDATION?
- Emory University is the largest funder on record, with $1,588,999 in grants. The full list of funders is on this page.
- How can an organization like DYSTONIA MEDICAL RESEARCH FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Illinois. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2018–2025), and the filings of 94 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing