DYSTONIA MEDICAL RESEARCH FOUNDATION Charity Report

Public IRS 990 nonprofit record

DYSTONIA MEDICAL RESEARCH FOUNDATION

EIN 95-3378526 · Medical Research (H48Z)

What they do

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.

Before you give

Should I give to this charity?

Easy charity check

Look at where the money went

Of every $100 spent, about $79.80 was reported for mission work. Use the spending picture below and ask what results that work produced.

Plain answer: A tax form cannot prove that a charity is doing good. It can show how the charity says it spent its money—and point out questions you should ask.

Basic facts we verified

IRS warning checkNo IRS revocation warning appears in this data.

Money report from 2024The charity has a recent tax report to read.

They explain their jobThe charity tells us what it is trying to do.

They name their leaders30 people are listed in the latest report.

You can reach themThey list contact information, so you can ask questions.

Money made simple

73.49%of revenue went to mission work79.8% of expenses · Program services

7.79%of revenue went to fundraising8.5% of expenses

$80.97spent for every $100 of revenueRevenue covered expenses this year.

10.77%of revenue went to management and office costs11.7% of expenses

$2.39in assets for every $1 spent this yearSome assets cannot be spent right away.

78.0%of its money came from giftsOther money may come from services or investments.

Ask these three easy questions

Who did you help? Ask for a recent story or report that shows real results.
What will my money do? Ask exactly what your gift will pay for.
Is this really the charity? Give only through its official website or confirmed phone number.

Pay context: The highest compensation shown in this filing is $199,869 for JANET HIESHETTER (SEC/EXEC DIR). Compare pay with organizations of similar size and complexity.

Bottom line: Do not decide from a name, mission statement, or tax status alone. Look at where the money went, then ask what changed, who was helped, and what your gift will do. YouCanGiveBack does not endorse or grade organizations.

Money

Financial picture

Tax year 2024

A plain-language look at the latest Form 990 figures available. These numbers help you ask better questions; they do not, by themselves, rate whether a charity is good or bad.

$100revenue

How each $100 of revenue was used

The large number compares each expense with revenue. The smaller number shows its share of total expenses.

Total reported revenue$3,214,752

Mission workProgram services$2,362,58773.49% of revenue79.8% of expenses

ManagementOffice and general costs$346,25110.77% of revenue11.7% of expenses

FundraisingAsking for donations$250,4857.79% of revenue8.5% of expenses

Revenue left after expensesReported annual surplus$255,4297.95% of revenueShown in gray on the chart

Total expenses$2,959,32392.05% of revenue

Gray means reported revenue left after expenses for this filing year. It does not necessarily mean cash sitting in a bank account.

Has the pattern changed?

Colored bars = expense mix: how each year’s expenses were divided. Total expenses vs. revenue shows whether the charity spent less or more than it received. The current filing is first.

YearExpense mixDetails

2024CurrentExpense mix: 79.8% mission · 11.7% management · 8.5% fundraisingTotal expenses: 92.05% of revenue

2023Expense mix: 84.2% mission · 9.2% management · 6.6% fundraisingTotal expenses: 113.63% of revenue

2022Expense mix: 79.7% mission · 10.5% management · 9.8% fundraisingTotal expenses: 97.17% of revenue

2021Expense mix: 79.2% mission · 11.2% management · 9.6% fundraisingTotal expenses: 84.02% of revenue

2020Expense mix: 78.8% mission · 9.4% management · 11.8% fundraisingTotal expenses: 89.44% of revenue

2019Expense mix: 80.1% mission · 8.2% management · 11.6% fundraisingTotal expenses: 97.41% of revenue

2018Expense mix: 81.4% mission · 7.3% management · 11.2% fundraisingTotal expenses: 110.44% of revenue

2016Expense mix: 82.5% mission · 6.6% management · 10.9% fundraisingTotal expenses: 48.19% of revenue

Money in and money out

Revenue$3,654,855

Expenses$2,959,323

Annual surplus $695,532 Revenue was higher than expenses for this filing year.

Reported spending amounts

Mission work means the Form 990 category called program services. These are reported accounting categories—not an independent measurement of results.

Mission work (program services)$2,362,587 · 79.8% of expenses

Management and office costs$346,251 · 11.7% of expenses

Fundraising$250,485 · 8.5% of expenses

See all reported dollar amounts

Revenue$3,654,855

Expenses$2,959,323

Assets$7,080,944

Income$4,259,301

Contributions$2,851,281

Mission work (program services)$2,362,587

Fundraising$250,485

Grants given$5,008,591

Average grant$66,781

Management and general$346,251

Executive compensation (total)$173,266

Stocks and bonds$4,643,298

Accounting fees$30,084

Investing fees$28,633

People

Leadership and board

Tax year 2024

Names, titles, time, and compensation below are reported by the organization on its Form 990.

People reported as paid

Person and titleCompensation

JANET HIESHETTERSEC/EXEC DIR · 59 hrs/week $199,869Base $183,898 · Other $15,971

DEBORAH DURRERDIR DEVELOPMENT · 38 hrs/week $130,097Base $96,599 · Other $33,498

JENNIFER MCNABOLADIR FINANCE · 30 hrs/week $124,334Base $95,167 · Other $29,167

Compensation alone does not tell whether pay is reasonable. Consider the charity’s size, work, location, and results.

See everyone listed on the board or leadership roster (30)

JANET HIESHETTERSEC/EXEC DIR

DEBORAH DURRERDIR DEVELOPMENT

JENNIFER MCNABOLADIR FINANCE

JON DAVISDIRECTOR

JOEL PERLMUTTER MDSCIENTIFIC DIR

KAREN ROSSVICE PRESIDENT

LIZ RAWSONDIRECTOR

MARC MILLERDIRECTOR

MARILYNNE HERBERTDIRECTOR

MARK RUDOLPHPRESIDENT

PAULA SCHNEIDERVICE PRESIDENT

RICHARD LEWISVICE PRESIDENT

ROBIN MILLERDIRECTOR

RON HERSHVICE PRESIDENT

ROSALIE LEWISDIRECTOR

SANDRA WEILDIRECTOR

STEFANIE JACKSONDIRECTOR

JOHN DOWNEYTREASURER

ALLISON LONDONDIRECTOR

FRANCES BELZBERGDIRECTOR

ERWIN JACKSONDIRECTOR

DIANE RUDOLPHDIRECTOR

DENNIS KESSLERDIRECTOR

DAN LEWISDIRECTOR

CHRIS VON DER AHEDIRECTOR

CAROLE RAWSONVICE PRESIDENT

BRIAN KEANEDIRECTOR

BILL MCLAUGHLINDIRECTOR

BARBARA KESSLERVICE PRESIDENT

ART KESSLERDIRECTOR

About this charity

Recognized since: January 1980
Location: 1 E WACKER DR STE 1730, CHICAGO, IL 60601-1980
County: Cook
In care of: JOHN DOWNEY
Primary officer: JOHN DOWNEY, Treasurer

How to reach them

WebsiteVisit the charity’s website Phone(312) 755-0198

Filing and classification

Latest tax year: 2024
Tax period began: January 1, 2024
Return type: 990
Tax preparer: BARNES GIVENS & BARNES LTD
NTEE classification: Medical Research (H48Z)
Grant-giving organization: Yes