Past Events
2022
May 16-17: DC 10th Annual Meeting (2-day Webinar)
Day One
- Jinnah: Welcome & Goals
- Comella: Botulinum toxins
- Jinnah: Oral medications
- Shukla: Surgical interventions
- Defazio: Rating scales
- Peterson: Objective measures
- Richardson: Add on therapies
- Q&A
Day Two
- Jinnah: Welcoming remarks
- Jinnah: PPP
- Cruchaga: PPP awardee
- Comella: CDA
- Parlakturk: CDA awardee
- Hieshetter & Kuman: PAG
- Jinnah: Summary
- Q&A
Pilot Project Program (PPP) and Career Development Award (CDA)
2021
June 1-2: DC 9th Annual Meeting
This meeting has been planned to inform attendees about clinical trial readiness and the Dystonia Coalition’s contributions to this area.
Day 1: 1 June 2021
Link to the agenda. Link to the webinar recording.
Speaker Slides (pdf)
- HA Jinnah: Introduction
- JS Perlmutter: What Do We Mean by "Clinical Trial Readiness"?
- S Pirio Richardson: What Types of Clinical Trials Do We Need to be Ready For?
- HA Jinnah: What Types of Therapeutic Agents Are Ready for Testing?
- M Hallet: Can We Clearly Define Appropriate Patient Populations for Trials?
- D Peterson: Do We Have Adequate Measurement Tools to Assess Outcomes?
- C Cruchaga: Can we Develop Biomarkers for Dystonia?
Day 2: 2 June 2021
Link to the agenda. Link to the webinar recording.
Speaker Slides (pdf)
- S Pirio Richardson: Pilot Project: Goals & Selection Criteria
- M Hammer: Non-Invasive Mechanosensory Perturbation to Test Voice-Related Motor and Somatosensory Cortical Responses in Spasmodic Dystonia
- C Comella: Career Development Program: Goals & Selection Criteria
- L Rocchi: Repetitive somatosensory stimulation in focal hand dystonia: a study on inhibitory circuitry plasticity of the somatosensory system and primary motor cortex
- J Hieshetter & K Kuman: Patient Advocacy Group Update & Plans
- HA Jinnah: Dystonia Coalition: Where are we now & where are we going?
June 8: Patient Advocacy Group Webinar: The Dystonia Coalition
A conversation with the Director, Dr. H. A. Jinnah, MD, PhD. Link to webinar recording.
2020
New DC Funding Cycle
The DC has been funded for another 5 years (2019-2024)!
June 3: DC 8th Annual Meeting Webinar
This meeting has been planned to inform attendees about the Dystonia Coalition structure and how to be involved, past achievements, and new projects.
Link to the agenda. Link to webinar recording.
Speaker slides:
- Link to Introduction: H. A. Jinnah
- Link to Natural History (NH) Project: J. S. Perlmutter
- Link to Biobank (BB) Project: Carlos Cruchaga
- Link to Patient-Centered Outcomes Project: S. Pirio Richardson
- Link to Objective Measures (OM) Project: D. Peterson
- Link to Patient Advocacy Groups (PAGs): K. Kuman & J. Hieshetter
2016
March 3-4: Seventh Dystonia Coalition Meeting, Rockville, MD
Meeting Agenda: Download agenda [pdf]
November 3: 4th Conference on Clinical Research for Rare Diseases, Washington, DC
2014
November 6-7: Sixth Annual Dystonia Coalition Meeting, St. Louis, MO
2013
October 16-17: Fifth Annual Dystonia Coalition Meeting, Atlanta, GA
2012
September 13-14: Fourth Annual Dystonia Coalition Meeting, Chicago, IL
2010
January: Bachmann Strauss Outlook: Dystonia Coalition Announcement
April/May: Dystonia Coalition Announcement
October 21-22: Second Annual Dystonia Coalition Meeting, Atlanta, GA
- Meeting Agenda
- Group Photo
- Dystonia Coalition Provides Two More Career Development Awards:
- Mateusz Zurowski, MD, MSc, FRCPC: Psychiatric Assessments Of Patients With Cervical Dystonia, Funded In Partnership With The DMRF
- Alberto Espay, MD, MSc: Sensory And Emotional Processing In Psychogenic Dystonia: A Functional Magnetic Resonance Imaging Study, Funded In Partnership With The DMRF
- Dystonia Coalition Awards Two More Pilot Studies:
- Kailash Bhatia, MD,DM, FRCP: DYT6 Dystonia – A Window To The Mechanisms Of Primary Dystonia?
- Emmanuel Roze, MD, PhD: Cerebellum And Cortical Plasticity: The Case Of Focal Dystonia
2009
November 5: Inaugural Dystonia Coalition Meeting
- Meeting Agenda
- Group Photo
- First Career Development Award Goes To Maren Carbon-Corell To Develop A Marker For Dystonia Based On FMRI Patterns In The Brain, Funded In Partnership With The DMRF
- Dystonia Coalition Awards First Three Pilot Studies:
- Mark LeDoux, MD, PhD: THAP1 Sequence Variants In Dystonia
- Giovanni DeFazio, MD, PhD: Development And Validation Of Clinical Diagnostic Guidelines And A Novel Severity Rating Scale For Primary Blepharospasm, Funded In Partnership With The BEBRF
- Steve Frucht, MD: A Multicenter, Exploratory, Double Blind, Placebo Controlled, Dose Escalation Study Of Sodium Oxybate As A Symptomatic Treatment For Idiopathic Cervical Dystonia, Funded In Partnership With The NSTA