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DMRF Remembers Co-founder Fran Belzberg, 1927-2026

We are deeply saddened to announce the death of Frances Belzberg, co-founder of the Dystonia Medical Research Foundation (DMRF). Fran and her husband, Sam, established the DMRF in 1976 after their daughter, Cheri, was diagnosed with dystonia. They immediately recognized the importance of engaging dystonia experts to join with the DMRF to work on developing treatments and ultimately a cure. They worked tirelessly to engage researchers, with a focus on young investigators, to the field and ignited the global dystonia research effort. Fran and Sam pioneered the practice of having open meetings with scientific advisors reviewing grant applications and having scientific discussions with the lay leadership present. This practice was novel at the time and allowed members of the DMRF Board of Directors to better understand the process and challenges of dystonia research.

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Current Dystonia Research Investigations

The Dystonia Medical Research Foundation (DMRF) prides itself on a long history of supporting and stimulating dystonia research

Creating Clinical Trial Readiness for cAMP-Related Dystonias through Natural History Characterization and Therapeutic Discovery

Dr. Ebrahimi-Fakhari’s research will study cAMP-related dystonias and how rare and severe childhood movement disorders are caused by genetic changes that disrupt communication between brain cells. Affected children experience uncontrolled movements, painful muscle contractions, and severe dystonic episodes, yet there are currently no disease-modifying treatments and few therapeutic options. This project will follow 100 children over two years to better understand how these conditions progress and to identify meaningful measures needed for future clinical trials. In parallel, researchers will create patient-derived brain cell models to study disease mechanisms and screen thousands of existing FDA-approved drugs to identify potential treatment candidates.
Darius Ebrahimi-Fakhari, MD, PhD & Katerina Bernardi, MDBoston Children’s Hospital
Integrative Transcriptomic and Machine Learning Framework for Novel Dystonia Gene Identification

Dr. Sarmiento researches how dystonia is a rare movement disorder that causes involuntary muscle contractions and abnormal postures, yet about 80% of cases still lack a known genetic cause. This project will use advanced computational and machine learning approaches to analyze brain gene-expression data and identify new genes that may contribute to dystonia. Researchers will then examine large whole-genome datasets from children with dystonia to find rare, potentially harmful genetic variants in these candidate genes. The goal is to improve genetic diagnosis, better understand disease mechanisms, and support the development of targeted therapies for affected children.
Ignacio Keller Sarmiento, MDNorthwestern University
Predictive Modeling of Dystonic Biomarkers Using Minimally Invasive EEG Recordings

Dystonia is a common movement disorder characterized by involuntary muscle contractions and abnormal postures, but its causes and early detection remain poorly understood. This project studies early brain changes using a mouse model in which some animals develop dystonia while others with the same mutation remain symptom-free. Researchers will record brain activity using electroencephalography (EEG) and track movement over time to identify patterns that predict when dystonia symptoms will appear. The goal is to discover early brain markers that could help doctors detect dystonia sooner and guide more effective treatments.
Viviana Hernández Castañón, PhDVirginia Tech University
Autophagic Targeting of Nuclear Condensates to Restore Protein Homeostasis in Dystonia

DYT1 dystonia is a childhood-onset movement disorder caused by mutations in the torsin protein, which disrupts how cells maintain healthy proteins. This research found that cells lacking torsin form harmful protein clusters, called condensates, that trap important quality-control factors and lead to cellular stress. Building on previous discoveries, this project will test how activating autophagy—the cell’s natural cleanup system—can remove these toxic condensates and restore normal protein balance. The work aims to identify new therapeutic targets and potential treatment strategies for dystonia.
Nguyen Minh Thu Pham, PhDYale University
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