Civic Intelligence

Dystonia Medical Research Foundation

EIN 95-3378526 • 501(c)3 • Chicago, IL

Profile

THE FOUNDATION HAS THREE MAIN PURPOSES: (1) TO ADVANCE RESEARCH BY AWARDING GRANTS TO BASIC, TRANSLATIONAL, AND CLINICAL INVESTIGATORS AND TO MEDICAL/SCIENTIFIC INSTITUTIONS COMMITTED TO FINDING THE CAUSE AND CURE FOR DYSTONIA; (2) TO PROMOTE 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 AND ADVOCATING FOR THOSE AFFECTED BY DYSTONIA AND THEIR FAMILIES, AND BY PRODUCING AND DISTRIBUTING EDUCATIONAL MATERIALS, BOTH PRINTED AND ELECTRONIC; AND (3) TO SPONSOR PATIENT AND FAMILY SUPPORT GROUPS AND EDUCATION PROGRAMS INCLUDING THE CREATION AND promotion of virtual educational meetings and electronic social networks for dystonia-affected persons who are unable to attend meetings and forums.

Refreshing map…

One East Wacker Drive 1730Chicago, IL 60601

www. dystonia-foundation.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

60th percentile

0.20x

Higher debt load relative to assets than 60% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Liabilities / Revenue

71st percentile

0.40x

Higher debt load relative to revenue than 71% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Net Margin

58th percentile

7.9%

Higher net margin than 58% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Top Officer Pay

74th percentile

$199,869

Higher top officer pay than 74% of similar nonprofits.

Top officer pay equals 6.2% of source-year revenue.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Asset Growth

35th percentile

-0.3%

Faster asset growth than 35% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Revenue Growth

51st percentile

7.6%

Faster revenue growth than 51% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Assets

Down

$6,422,430

Down $21,264 (-0.3%) from 2023

Liabilities

Down

$1,298,142

Down $292,933 (-18%) from 2023

Net Assets

Up

$5,124,288

Up $271,669 (+5.6%) from 2023

Revenue

Up

$3,214,752

Up $227,893 (+7.6%) from 2023

Expenses

Down

$2,959,323

Down $434,664 (-13%) from 2023

Net Income

Up

$255,429

Up $662,557 (+163%) from 2023

Trend Graphs

Balance Sheet Trend

Grouped bars show assets, liabilities, and net assets across loaded filings.

$8.0M$6.0M$4.0M$2.0M$0Assets 2010: $3,604,243Liabilities 2010: $974,151Net Assets 2010: $2,630,0922010Assets 2011: $3,572,303Liabilities 2011: $949,617Net Assets 2011: $2,622,6862011Assets 2012: $3,676,384Liabilities 2012: $1,254,120Net Assets 2012: $2,422,2642012Assets 2013: $2,992,639Liabilities 2013: $1,104,103Net Assets 2013: $1,888,5362013Assets 2014: $2,810,175Liabilities 2014: $680,114Net Assets 2014: $2,130,0612014Assets 2015: $2,531,578Liabilities 2015: $752,149Net Assets 2015: $1,779,4292015Assets 2016: $5,231,670Liabilities 2016: $796,770Net Assets 2016: $4,434,9002016Assets 2017: $5,171,798Liabilities 2017: $953,412Net Assets 2017: $4,218,3862017Assets 2018: $4,662,461Liabilities 2018: $987,735Net Assets 2018: $3,674,7262018Assets 2019: $5,351,796Liabilities 2019: $1,204,296Net Assets 2019: $4,147,5002019Assets 2020: $6,071,766Liabilities 2020: $1,406,209Net Assets 2020: $4,665,5572020Assets 2021: $6,898,919Liabilities 2021: $1,512,549Net Assets 2021: $5,386,3702021Assets 2022: $6,256,038Liabilities 2022: $1,459,885Net Assets 2022: $4,796,1532022Assets 2023: $6,443,694Liabilities 2023: $1,591,075Net Assets 2023: $4,852,6192023Assets 2024: $6,422,430Liabilities 2024: $1,298,142Net Assets 2024: $5,124,2882024

Highlighted filing

2024

Assets$6,422,430
Liabilities$1,298,142
Net Assets$5,124,288

Operations Trend

Revenue, expenses, and net income by year, with the latest filing highlighted.

$6.0M$4.0M$2.0M$0-$2.0MExpenses 2010: $2,999,1462010Expenses 2011: $2,743,7952011Expenses 2012: $3,108,2822012Revenue 2013: $2,150,960Expenses 2013: $2,684,688Net Income 2013: -$533,7282013Revenue 2014: $2,355,875Expenses 2014: $2,114,350Net Income 2014: $241,5252014Revenue 2015: $2,025,058Expenses 2015: $2,375,690Net Income 2015: -$350,6322015Revenue 2016: $5,125,648Expenses 2016: $2,470,177Net Income 2016: $2,655,4712016Revenue 2017: $2,357,386Expenses 2017: $2,608,986Net Income 2017: -$251,6002017Revenue 2018: $2,417,667Expenses 2018: $2,670,058Net Income 2018: -$252,3912018Revenue 2019: $2,689,900Expenses 2019: $2,620,294Net Income 2019: $69,6062019Revenue 2020: $2,515,900Expenses 2020: $2,250,219Net Income 2020: $265,6812020Revenue 2021: $2,942,734Expenses 2021: $2,472,524Net Income 2021: $470,2102021Revenue 2022: $2,569,110Expenses 2022: $2,496,291Net Income 2022: $72,8192022Revenue 2023: $2,986,859Expenses 2023: $3,393,987Net Income 2023: -$407,1282023Revenue 2024: $3,214,752Expenses 2024: $2,959,323Net Income 2024: $255,4292024

Highlighted filing

2024

Revenue$3,214,752
Expenses$2,959,323
Net Income$255,429

Filings

Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$6.42$1.30$5.12$3.21$2.96$0.26
2023Summary only. Only limited summary data is available for this year.$6.44$1.59$4.85$2.99$3.39$0.41
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$6.26$1.46$4.80$2.57$2.50$0.07
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$6.90$1.51$5.39$2.94$2.47$0.47
2020Summary only. Only limited summary data is available for this year.$6.07$1.41$4.67$2.52$2.25$0.27
2019Facts available. Structured filing facts are available, but richer extracted sections are limited.$5.35$1.20$4.15$2.69$2.62$0.07
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.66$0.99$3.67$2.42$2.67$0.25
2017Summary only. Only limited summary data is available for this year.$5.17$0.95$4.22$2.36$2.61$0.25
2016Summary only. Only limited summary data is available for this year.$5.23$0.80$4.43$5.13$2.47$2.66
2015Detailed filing. Detailed filing data is available for this year.$2.53$0.75$1.78$2.03$2.38$0.35
2014Detailed filing. Detailed filing data is available for this year.$2.81$0.68$2.13$2.36$2.11$0.24
2013Detailed filing. Detailed filing data is available for this year.$2.99$1.10$1.89$2.15$2.68$0.53
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$3.68$1.25$2.42$3.11
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$3.57$0.95$2.62$2.74
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$3.60$0.97$2.63$3.00
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Aug 12, 2025
Return Version
2024v5.2
Gross Receipts
$3,990,298
Mission and Program Overview

Mission

THE FOUNDATION HAS THREE MAIN PURPOSES: (1) TO ADVANCE RESEARCH BY AWARDING GRANTS TO BASIC, TRANSLATIONAL, AND CLINICAL INVESTIGATORS AND TO MEDICAL/SCIENTIFIC INSTITUTIONS COMMITTED TO FINDING THE CAUSE AND CURE FOR DYSTONIA; (2) TO PROMOTE 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 AND ADVOCATING FOR THOSE AFFECTED BY DYSTONIA AND THEIR FAMILIES, AND BY PRODUCING AND DISTRIBUTING EDUCATIONAL MATERIALS, BOTH PRINTED AND ELECTRONIC; AND (3) TO SPONSOR PATIENT AND FAMILY SUPPORT GROUPS AND EDUCATION PROGRAMS INCLUDING THE CREATION AND promotion of virtual educational meetings and electronic social networks for dystonia-affected persons who are unable to attend meetings and forums.

The mission of the dmrf is to advance research for more effective treatments and ultimately a cure for dystonia, to promote awareness and education and to support the well being of dystonia affected individuals and families.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$4,628,936$4,643,298▲ $14,362
Cash and Non-Interest-Bearing Accounts$689,422$838,865▲ $149,443
Savings and Temporary Cash Investments$346,741$641,513▲ $294,772
Accounts Receivable$529,047$84,931▼ $444,116
Land, Buildings, and Equipment, Net$8,263$7,953▼ $310
Other Notes and Loans Receivable, Net-$0-
Pledges and Grants Receivable-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Prepaid Expenses and Deferred Charges-$0-
Total Assets$6,443,694$6,422,430▼ $21,264
Other Assets Total$241,285$205,870▼ $35,415
Liabilities
Escrow Account Liability$601,276$505,776▼ $95,500
Grants Payable$563,470$499,428▼ $64,042
Other Liabilities$258,089$203,971▼ $54,118
Accounts Payable and Accrued Expenses$93,240$88,967▼ $4,273
Deferred Revenue$75,000--
Total Liabilities$1,591,075$1,298,142▼ $292,933
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$2,799,728$3,149,091▲ $349,363
Net Assets With Donor Restrictions$2,052,891$1,975,197▼ $77,694
Total Net Assets Fund Balance$4,852,619$5,124,288▲ $271,669
Total Liabilities and Net Assets / Fund Balance$6,443,694$6,422,430▼ $21,264

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$7,953$28,475$36,428
Other Land Buildings-$7,157$7,157
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Janet HieshetterSec/EXEC DirectorFT$183,898$15,971$199,869
Deborah DurrerDirector DevelopmentFT$96,599$33,498$130,097
Jennifer McnabolaDirector FinancePT$95,167$29,167$124,334

Board Members and Trustees

NameTitle
Mark RudolphPresident
Barbara KesslerVice President
Carole RawsonVice President
Karen RossVice President
Paula SchneiderVice President
Richard LewisVice President
Ron HershVice President
Allison LondonDirector
Art KesslerDirector
Bill MclaughlinDirector
Brian KeaneDirector
Chris Von Der AheDirector
Dan LewisDirector
Dennis KesslerDirector
Diane RudolphDirector
Erwin JacksonDirector
Frances BelzbergDirector
Jon DavisDirector
Liz RawsonDirector
Marc MillerDirector
Marilynne HerbertDirector
Robin MillerDirector
Rosalie LewisDirector
Sandra WeilDirector
Stefanie JacksonDirector
Joel Perlmutter MdScientific Director
John DowneyTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Jan Teller Ma PhdChief Sci AdvisorNIP 7773338319 LUCZNIKOWIO, Niemcz, Pl$154,008
Revenue and Support

Revenue Composition

Contributions and Grants
$2,851,281
Program Service Revenue
$0
Investment Income
$327,960
Other Revenue
$35,511
All Other Contributions
$2,448,627
Change in Net Assets
$255,429

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
No
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Securities Publicly Traded4$95,696Fair Market Value (FMV)
Total Noncash Contributions4$95,696-

Audited Revenue Reconciliation

Revenue per Audited Statements
$3,186,119
Revenue Not Reported on Financial Statements
$28,633
Revenue Not Reported on Form 990
$52,008
Total Revenue per Audited Statements
$3,238,127
Total Revenue per Form 990
$3,214,752
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$1,115,629
Grants and Similar Amounts Paid$973,113
Salaries, Compensation, and Employee Benefits$870,581
Total Fundraising Expense$250,485
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$709,399--$709,399
Other Salaries and Wages$373,197$107,520$60,838$541,555
Fees for Services Other$230,624$22,709$41,814$295,147
Foreign Grants$263,714--$263,714
Current Officers, Directors, Trustees, and Key Employees$136,990$39,835$23,044$199,869
Occupancy$76,332$18,931$11,447$106,710
Conferences and Meetings$90,493$3,413$2,954$96,860
Information Technology$65,839$11,919$18,383$96,141
Travel$67,668$1,024$6,747$75,439
Other Employee Benefits$36,188$12,986$10,863$60,037
Payroll Taxes$38,514$11,096$6,279$55,889
Fees for Services Lobbying$51,731--$51,731
Other Expenses$33,154$2,060$6,049$41,263
All Other Expenses$26,836$3,515$3,198$33,549
Fees for Services Accounting$4,798$24,385$901$30,084
Fees for Service Investment Mgmnt Fees-$28,633-$28,633
Fees for Services Legal-$24,070-$24,070
Pension Plan Contributions$9,118$2,627$1,486$13,231
Insurance$7,071$1,533$1,765$10,369
Depreciation Depletion$3,431$752$645$4,828
Total Functional Expenses$2,362,587$346,251$250,485$2,959,323

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,966,458
Total Expenses per Form 990$2,959,323
Expenses per Audited Statements$2,930,690
Expenses Not Reported on Form 990$35,768
Expenses Not Reported on Financial Statements$28,633
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Yale UniversityNew Haven, CT-medical research$181,091
Duke University Medical CtrDurham, NC-medical research$155,545
University of California SFSan Francisco, CA-medical research$99,978
Virginia PolytechnicBlocksburg, VA-medical research$90,545
Baylor College of MedicineHouston, TX-medical research$66,718
Icahn Schl of Med at Mt SinaiNew York, NY-medical research$65,000
Emory UniversityAtlanta, GA-medical research$50,515

International Summary

Spending
$280,151

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
EuropeMedical ResearchPathogenesis workshop00$173,169
North AmericaMedical Research-00$90,545
EuropeTravel Reimbursement-00$16,437
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
Yes
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Gaming Gross Income$49,555
Fundraising Direct Expenses$34,499
Fundraising Gross Income$34,499
Gaming Direct Expenses$16,100
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
1919 Event$35,344---
Zoo Walks$259,262$29,245$29,245$0
Total Events$421,889$34,499$34,499-
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Operating lease liability$200,215
Financing lease liability$3,756
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 2

Art kessler is the son of dennis and barbara kesslerdennis kessler is the spouse of barbara kessler and father of art kesslerbarbara kessler is the spouse of dennis kessler and mother of art kesslerdan lewis is the son of richard and rosalie lewisrosalie lewis is the spouse of richard lewis and mother of dan lewisrichard lewis is the spouse of rosalie lewis and father of dan lewismark rudolph is the spouse of diane rudolphdiane rudolph is the spouse of mark rudolpherwin jackson is the spouse of stefanie jacksonstefanie jackson is the spouse of erwin jacksonmarc miller is the spouse of robin millerrobin miller is the spouse of marc millerliz rawson is the daughter of carole rawsoncarole rawson is the mother of liz rawsonallison london is the daughter of ron hershron hersh is the father of allison london

Form 990, Part VI, Section B, Line 11B

The board of directors has delegated the review of the form 990 to the tax review task force, which is approved by the board of directors and comprised of the president, treasurer and two other members of the board of directors. Prior to the signing and filing of the form 990, management, outside cpa, the tax review task force and the independent accountant who prepares the form 990 meet to review the entire form. Upon approval by the tax review task force, the form 990 is made available to all members of the board of directors for review and approval, after which it is signed by the treasurer and filed.

Form 990, Part VI, Section B, Line 12C

On an annual basis, dmrf requests written statement of any conflicts from members of the board. The board president, along with the executive director, monitor and report potential conflicts to the chair of the audit committee. Any conflicts that are determined to exist are reported to the board and dealt with accordingly.

Form 990, Part VI, Section B, Line 15A

Annually, the dmrf board president consults with the board of directors regarding the performance of the executive director and prepares a written performance evaluation. The board president, after consultation with the board, determines salary action, if any, and meets with the executive director to discuss the performance evaluation. Comparative salary information is obtained about organizations of similar scope and size from the association forum of chicagoland and through other publicly available documents.

Form 990, Part VI, Section C, Line 19

Dmrf's form 990, audited financial statements, the annual report, and the board approved annual operating plan are available on the foundation's website. Conflict of interest, governing documents and policies are available upon request.

Filing and Contact Details

Filer

Filer Name
Dystonia Medical Research Foundation
EIN
95-3378526
Phone
3127550198
Address
ONE EAST WACKER DRIVE 1730, CHICAGO, IL 60601

Signing Officer

Name
John Downey
Title
Treasurer
Signed
2025-08-12
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Janet Hieshetter
Formed
1977
Legal Domicile
CA
Voting Board Members
25
Independent Board Members
25
Employees
13
Volunteers
725

Preparer

Firm
Barnes Givens & Barnes Ltd
Address
200 E Evergreen Ave Suite 117, Mount Prospect, IL 60056
Preparer
William J Barnes
Phone
2247642442
Supplemental Narrative

Financial Statement Notes

Part IV, Line 2B: Explanation of escrow account liability

The foundation serves as the administrative center for the dystonia coalition (the coalition), a network of clinical research centers working to advance the understanding of primary dystonias that is supported by the national institutes of health (nih) national center for the advancement of translational sciences. In this role, the foundation works with the project's principal investigator, dr hyder a jinnah of emory university, and all coalition main clinical project leaders to support the activities of the coalition, including but not limited to: meeting planning; managing payments to clinical sites participating in the coalition's main clinical projects as well as to coalition consultants and recipients of the coalition's career development and pilot projects awards; managing private funds given in support of the coalition's activities or programs; participating in monthly administrative planning meetings; participating in the coalition's executive committee; and performing other duties as requested by the principal investigator and/or the coalition's main clinical project leaders or the coalition executive committee. Total receipts for the coalition were $416,077 in 2024. Total disbursements for the coalition were $115,084 in 2024.the dmrf also serves as the administrative center for other dystonia community projects such as the global dystonia registry and the dystonia brain collective which are supported by the dmrf and other dystonia patient advocacy groups. Total receipts for dystonia community projects were $35,628 in 2024. Total disbursements for dystonia community projects were $31,044 in 2024.

Part X : FIN48 Footnote

The Foundation is a not-for-profit organization exempt from paying corporate federal income tax under Section 501(c)(3)of the Internal Revenue Code. It has been classified as an organization that is not a private foundation under the Internal Revenue Code and charitable contributions by donors are tax deductible.The Foundation files Form 990, Return of Organization Exempt from Income Tax with the Federal government. The Foundation also files Form AG990-IL, Illinois Charitable Organization Annual Report, with the Attorney General of the State of Illinois and Form 109, California Exempt Organization Business Income Tax Return, with the State of California. Management has determined that the Foundation has no income tax liability as of December 31, 2024. The Foundation has evaluated its tax positions and determined it has no uncertain tax positions at December 31, 2024. The Foundation's 2021-2024 tax years are open for examination by the IRS and State of Illinois and 2020-2024 for the State of California. Should the Foundations tax-exempt status be challenged in the future, all years since inception could be subject to review by the IRS.

Part XI, Line 2D: Other revenue amounts included in F/S but not included on form 990

Canadian reimbursements $35768

Part XII, Line 2D: Other expenses and losses per audited F/S

Canadian reimbursements $35768

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This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/GrantsToOrganizationsInd0true
IRS990/GrantToRelatedPersonInd0false
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt0887657
IRS990/GrossReceiptsAmt03990298
IRS990/GroupReturnForAffiliatesInd0false
IRS990/IncludeFIN48FootnoteInd0true
IRS990/IncmFromInvestBondProceedsGrp/TotalRevenueColumnAmt00
IRS990/IndependentAuditFinclStmtInd0true
IRS990/IndependentVotingMemberCnt025
IRS990/IndivRcvdGreaterThan100KCnt01
IRS990/IndoorTanningServicesInd0false
IRS990/InfoInScheduleOPartIIIInd0X
IRS990/InfoInScheduleOPartVIInd0X

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