Form 990 for tax year 2024

Totals

Total revenue

$3,214,752

Total expenses

$2,959,323

Contributions and grants received

$2,851,281

Grants paid

$973,113

Program service revenue

$0

Investment income

$327,960

Other revenue

$35,511

Total assets, end of year

$6,422,430

Total liabilities, end of year

$1,298,142

Net assets or fund balances, end of year

$5,124,288

Program services expenses (Part IX)

$2,362,587

Management and general expenses

$346,251

Fundraising expenses

$250,485

Program service expenses (Part III)

$2,362,587

Program services were 79.8% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2024

• PROGRAM: SCIENCEISSUING 3 REQUESTS FOR APPLICATIONS FOR SCIENTIFIC RESEARCH; MANAGING THE PEER REVIEW PROCESS OF 24 SUBMITTED GRANT RESEARCH FELLOWSHIP AND CLINICAL FELLOWSHIP APPLICATIONS; SELECTING, FUNDING AND MANAGING 7 RESEARCH GRANTS, 4 RESEARCH FELLOWSHIPS AND 2 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 CONGRESS OF PARKINSON'S DISEASE AND MOVEMENT DISORDERS; DYSTONIA COALITION ANNUAL MEETING; AMERICAN NEUROLOGISTS ANNUAL MEETING; AND PATHOGENESIS OF DYSTONIA WORKSHOP.HOSTING A MEETING OF THE PATHOGENESIS OF DYSTONIA WORKING GROUP TO SUPPORT EFFORTS IN DEVELOPING TARGETED EFFECTIVE TREATMENT. ORGANIZING AND HOSTING A MEETING OF 18 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 FifTEENTH 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 $651,904 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 THE "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 $1,582,373 · Grants $973,113

• PROGRAM: AWARENESS AND EDUCATIONPUBLISHING THE "DYSTONIA DIALOGUE" NEWS MAGAZINE THREE TIMES A YEAR UNDER THE DIRECTION OF THE VOLUNTEER EDITORIAL BOARD AND DISTRIBUTING IT VIA MAIL OR ELECTRONIC COPY TO OVER 53,000 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 AND CD/DVDS 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, TWITTER, 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 $597,110

• 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 55 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 (146 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 $110,242

• 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 EIGHTEEN 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. $32 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 $72,862

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

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.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• Yale University

  $181,091

  medical research

• Duke University Medical Ctr

  $155,545

  medical research

• University of California SF

  $99,978

  medical research

• VIRGINIA POLYTECHNIC

  $90,545

  medical research

• Baylor College of Medicine

  $66,718

  medical research

• Icahn Schl of Med at Mt Sinai

  $65,000

  medical research

• Emory University

  $50,515

  medical research

Provenance

Return type

form_990

Tax year

2024

Filed

12 August 2025

IRS schema version

2024v5.2

Source object

202542249349300039

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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