DYSTONIA MEDICAL RESEARCH FOUNDATION

As filed

Subsection

03

NTEE code

H48Z

Classification

1000

Street

1 E WACKER DR STE 1730

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2025

• 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 DYSTONIA AND NEUROMODULATION IN DYSTONIA" TO SUPPORT EFFORTS IN DEVELOPING TARGETED EFFECTIVE TREATMENT. ORGANIZING AND HOSTING A MEETING OF 20 INVESTIGATORS TO SUPPORT THEIR EFFORTS TO WORK COLLABORATIVELY AND BUILD SCIENTIFIC WORKSHOPS. REVIEWING CURRENT RESEARCH DATA AND EXPLORING STUDIES NEEDED TO ACCELERATE IMPROVED TREATMENTS; ANDSUPPORTING AND MAINTAINING THE AVAILABILITY OF RESOURCES TO ACCELERATE DYSTONIA RESEARCH GLOBALLY SUCH AS THE DYSTONIA BRAIN COLLECTIVE AND GLOBAL DYSTONIA REGISTRY FOR USE BY THE INTERNATIONAL DYSTONIA COMMUNITY.IN ADDITION, THE DMRF IS SERVING IN ITS SIXTEENTH YEAR WITH NO COMPENSATION AS THE ADMINISTRATIVE CENTER FOR THE DYSTONIA COALITION, WHICH is a collaboration of medical researchers and patient advocacy groups supported by the Office of Rare Diseases Research in the National Center for Advancing Translational Sciences and The National Institute of Neurological Disorders and Stroke (NINDS) at the NIH. The goal of the Coalition is to advance the pace of clinical and translational research into dystonia to find better treatments and a cure. The objectives of the Coalition are to develop a fuller understanding of the many different features of dystonia and how they change over the years, to develop validated diagnostic strategies and rating tools for diagnosis and monitoring patients in clinical trials, to establish a natural history study biorepository where samples of blood and other materials can be stored and distributed for research, to catalyze clinical trials for promising new treatments and to promote education and awareness. THE DMRF WAS RESPONSIBLE FOR MANAGING $833,597 RESTRICTED FOR DYSTONIA COALITION WORK NOT INCLUDED IN THE FOUNDATION'S REPORTED ANNUAL REVENUES AND EXPENSES. THE DMRF ORGANIZED THE DYSTONIA COALITION'S ANNUAL MEETING.The DMRF partnerS with Frontiers Media to PUBLISH "Dystonia", the first scientific journal dedicated exclusively to the disorder. The journal bringS visibility to the growing Dystonia field and highlightS advancements in science and clinical practice. By gathering together a select group of researchers exploring this important issue, the DMRF'S GOAL IS to establish connections between great scientific minds to better understand the mechanisms of dystonia.

  Expenses $1,789,379 · Grants $1,130,358

• PROGRAM: 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; ANDPARTICIPATING IN ADVOCACY TO PROMOTE AWARENESS AMONGST LAWMAKERS ON TOPICS IMPORTANT TO DYSTONIA PATIENTS. SEE SCHEDULE O, PART III 4D FOR DETAILS.

  Expenses $648,678

• PROGRAM: 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 HELD);ANDPROVIDING MEETING MANAGEMENT SUPPORT SUCH AS EMAIL AND POSTAL NOTIFICATIONS AND A WEB-BASED CALENDAR ABOUT UPCOMING SUPPORT GROUP MEETINGS INCLUDING SUPPLYING DYSTONIA BROCHURES TO ALL SUPPORT GROUPS.

  Expenses $131,724

• PROGRAM: 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 INCREASED RESEARCH FUNDING FROM THE NATIONAL INSTITUTE OF HEALTH, ACCESS TO HEALTHCARE, AND APPROPRIATE, AFFORDABLE REIMBURSEMENT FOR DYSTONIA TREATMENTS.

  Expenses $81,728

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

The first 25 listed. Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

• 2025

  Revenue

  $3,654,855

  Expenses

  $3,242,781

  Contributions

  $3,435,644

  Grants paid

  $1,130,358

• 2024

  Revenue

  $3,214,752

  Expenses

  $2,959,323

  Contributions

  $2,851,281

  Grants paid

  $973,113

• 2023

  Revenue

  $2,986,859

  Expenses

  $3,393,987

  Contributions

  $2,774,096

  Grants paid

  $1,033,462

• 2022

  Revenue

  $2,569,110

  Expenses

  $2,496,291

  Contributions

  $2,391,324

  Grants paid

  $826,698

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

• 2021 · 990

  Revenue

  $2,942,734

  Expenses

  $2,472,524

  Assets (EOY)

  $6,898,919

• 2020 · 990

  Revenue

  $2,515,900

  Expenses

  $2,250,219

  Assets (EOY)

  $6,071,766

• 2019 · 990

  Revenue

  $2,689,900

  Expenses

  $2,620,294

  Assets (EOY)

  $5,351,796

• 2018 · 990

  Revenue

  $2,417,667

  Expenses

  $2,670,058

  Assets (EOY)

  $4,662,461

• 2016 · 990

  Revenue

  $5,125,648

  Expenses

  $2,470,177

  Assets (EOY)

  $5,231,670

• 2015 · 990

  Revenue

  $2,025,058

  Expenses

  $2,375,690

  Assets (EOY)

  $2,531,578

• 2014 · 990

  Revenue

  $2,355,875

  Expenses

  $2,114,350

  Assets (EOY)

  $2,810,175

• 2013 · 990

  Revenue

  $2,150,960

  Expenses

  $2,684,688

  Assets (EOY)

  $2,992,639

• 2012 · 990

  Revenue

  — not reported

  Expenses

  $3,108,282

  Assets (EOY)

  $3,676,384

• 2011 · 990

  Revenue

  — not reported

  Expenses

  $2,743,795

  Assets (EOY)

  $3,572,303

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

• University of California SF

  $217,361

  2022 · medical research

• Yale University

  $181,091

  2024 · medical research

• Duke University Medical Ctr

  $156,957

  2025 · medical research

• Duke University Medical Ctr

  $155,545

  2024 · medical research

• University of California SF

  $99,978

  2024 · medical research

• University of California SF

  $99,978

  2023 · medical research

• UNIVERSITY OF MICHIGAN

  $95,873

  2023 · medical research

• CASE WESTERN RESERVE

  $95,544

  2023 · medical research

• UNIVERSITY OF MICHIGAN

  $92,045

  2022 · medical research

• UNIV OF ALABAMA BIRMINGHAM

  $91,957

  2025 · medical research

The 10 largest by cash amount. The API serves every itemized grant.

Where these grants went next →

Grants received

• EMORY UNIVERSITY

  $530,250

  2022 · RESEARCH/SUBCONTRACT

• ST LOUIS COMMUNITY FOUNDATION

  $99,623

  2022 · GENERAL SUPPORT

• DONOR ADVISED CHARITABLE GIVING

  $63,550

  2024 · HEALTH

• DONOR ADVISED CHARITABLE GIVING

  $59,860

  2023 · HEALTH

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $55,772

  2024 · For grant recipient's exempt purposes

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $55,470

  2023 · For grant recipient's exempt purposes

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $54,753

  2022 · For grant recipient's exempt purposes

• NATIONAL PHILANTHROPIC TR

  $32,750

  2023 · EDUCATION

• NATIONAL PHILANTHROPIC TR

  $31,500

  2024 · HEALTH

• SILICON VALLEY COMMUNITY FOUNDATION

  $25,000

  2024 · Health

The 10 largest by cash amount. The API serves every itemized grant.

Other IRS files