Dystonia Medical Research Foundation

What it reported doing in 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.

Financial Efficiency

• Mission deployment rate: 73.9%; rating input score 74
• Program expense ratio: 81.8%; rating input score 82
• Fundraising efficiency: $16.11 raised per $1 spent on fundraising; rating input score 52; 52nd percentile among comparable filings

Transparency & Controls

• Consistency checks: 94.1%; rating input score 94; 23rd percentile among comparable filings
• Pay-setting controls: 3 of 6 controls in place; rating input score 50
  • Compensation committee: Missing
  • Independent consultant: Missing
  • Other Form 990s reviewed: Missing
  • Written employment contract: Pass
  • Compensation survey or study: Pass
  • Board or committee approval: Pass
• Foreign activity oversight: 4 of 8 controls in place; rating input score 50
  • Claims monitoring procedures: Pass
  • Requires narrative reports: Pass
  • Conducts field audits: Limited
  • May suspend future funding: Limited
  • Requires financial reports: Pass
  • Conducts site visits: Limited
  • Requires grant agreements: Pass
  • May require repayment: Limited
• Grant itemization coverage: 100%; rating input score 100; 75th percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 7 of 8 controls in place; rating input score 88
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: NotApplicable
  • Other executive compensation review process: Fail
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: 11.3%; rating input score 58; 58th percentile among comparable filings
• Total-asset coverage ratio: 2.18; rating input score 60; 60th percentile among comparable filings
• Liabilities to assets ratio: 0.16; rating input score 40; 40th percentile among comparable filings
• Officer compensation ratio: 18.4%; rating input score 17; 17th percentile among comparable filings

Growth

• Program expense growth: 2.2% per year; rating input score 100; 20th percentile among comparable filings
• Revenue growth: 1.3% per year; rating input score 100; 13th percentile among comparable filings
• Asset growth: 5.9% per year; rating input score 100; 38th percentile among comparable filings