The DMRF Canada is proud to be a member of the Dystonia Coalition. The Dystonia Coalition 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. Our mission is to advance the pace of clinical and translational research in the dystonias to find better treatments and a cure.
The Dystonia Coalition is a groundbreaking collaboration of medical researchers and patient advocacy groups focused on accelerating clinical research in the field. Fifty-six research centers in North America, Europe, Asia, and Australia are participating. New investigators and institutions may join the effort at any time. The Dystonia Coalition began in 2009 with a $6 million, five-year grant from the Office of Rare Diseases Research (ORDR) and the National Institute of Neurological Disorders & Stroke (NINDS). The Coalition is currently funded through 2024 by the ORDR in the National Center for Advancing Translational Sciences (NCATS) and the NINDS. The Program Director is Dr. H. A. Jinnah of Emory University School of Medicine. DMRF Scientific Director Dr. Joel S. Perlmutter of Washington University in St Louis is Co-Director.
The Dystonia Coalition’s open invitation to new investigators and broad collaborations have led to the collection of unprecedented amounts of detailed clinical data, video recorded examinations, and DNA samples from thousands of individuals with dystonia across different projects. Additional accomplishments include developing and testing new rating scales for cervical dystonia, blepharospasm, and laryngeal dystonia. Dystonia Coalition investigators have published 180 research papers in the medical literature to share discoveries and advancements.
Learn more about how you can get involved here.
- Dystonia Coalition 12th International Meeting 8 November 2024 - Funding Opportunity
The Dystonia Coalition, sponsored by the Office of Rare Diseases Research (ORDR) at the National Center for Advancing Translational Sciences (NCATS), the National Institute of Neurological Disorders and Stroke (NINDS), and associated Patient Advocacy Groups is pleased to announce the availability of travel stipends to the Dystonia Coalition 12th International Meeting for junior faculty, fellows, and trainees.
The meeting will take place on 8 November 2024, at the Westin Peachtree Plaza, 210 Peachtree St NW, Atlanta, GA 30303, USA preceding with a reception on November 7th.
We will be discussing the activities of the Dystonia Coalition and addressing the topic of overlap between dystonia and tremor.
Application instructions:
- Anyone with or without a Dystonia Coalition-affiliated institution may apply. US citizenship and affiliation with a US institution are not required.
- Applications should include the following:
1. A one-page cover letter describing how attendance to this meeting will be important to the applicant’s scientific growth and how the applicant’s particular interests/skills will benefit the dystonia community.
2. A NIH-style biosketch for the applicant. For directions and sample document, click here.
3. A brief letter from the applicant’s mentor supporting their attendance of this meeting. - Submit all materials in a single PDF file by email to Gamze Kilic-Berkmen (gkilicb@emory.edu), who will confirm receipt of each application with the sender. Paper applications cannot be accepted.
- Deadline for receipt of applications is 25 September 2024.
Please download the Dystonia Coalition 12th Travel Stipend document and the Dystonia Coalition 12th Agenda to find out more information on the event and funding opportunity.
- Principal Investigator H. A. ‘Buz’ Jinnah, MD, PhD provided an update on the activities and accomplishments of the Coalition and significance for the patient community.
Watch here: https://youtu.be/rI0Vm2boWuo.
- Presentations or recordings of the Dystonia Coalition Annual Meetings
Visit their website to find previous presentations and recordings of their annual meetings: https://dc.rarediseasesnetwork.org/events/past