2021
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?
Patient Advocacy Group Webinar: the Dystonia Coalition: 8 June 2021
A conversation with the Director, Dr. H. A. Jinnah, MD, PhD
Link to webinar recording
Dystonia Coalition Career Development and Pilot Projects Programs 2021
Funding opportunities for research projects focusing on dystonia
The goals of the awards are to facilitate career development for junior investigators interested in clinical and translational research relating to dystonia, provide a mechanism for more senior investigators from other fields to get involved in dystonia research, and foster the most promising clinical and translational studies of direct relevance to dystonia.
Career Development Program Pilot Projects Program
2020
New DC Funding Cycle
The DC has been funded for another 5 years (2019-2024)!
Meetings
Pilot Project Program (PPP) and Career Development Award (CDA) Applications
We are pleased to announce the return of the Dystonia Coalition Pilot Program and the Dystonia Coalition Career Development Awards! Below are the links to: the requests for applications, cover letters, the DC Bylaws document, which is required to be signed by applicant and applicant's institution's representative, and a list of awards previously funded under these mechanisms.
2019
The 71st Annual American Academy for Neurology Meeting, May 4-11, 2019, Philadelphia, PA
4th International Congress on Treatment of Dystonia, May 08-11, 2019, Hannover, Germany
Benign Essential Blepharospasm Research Foundation 2019 Annual Patient Symposium, September 7, 2019, Houston, TX
7th Biennial Workshop on Dystonia: Therapeutic Targets. Rome. Date: September 18-19, 2019
International Congress of Parkinson's Disease and Movement Disorder, September 22-26, 2019, Nice, France
2018
Dystonia Europe 25th Anniversary Conference, April 12, 2018, Novotel, Brussels
The 70th Annual American Academy for Neurology Meeting, April 21-27, 2018, Los Angeles, CA
2nd Pan American Parkinson’s Disease and Movement Disorders Congress, June 22-24, 2018, Miami
Benign Essential Blepharospasm Research Foundation 2018 Annual Patient Symposium, August 4, 2018, Atlanta, GA
5th Conference on Clinical Research for Rare Disease, October 4, 2018, Rockville, MD
International Congress of Parkinson’s Disease and Movement Disorders, October 5-9, 2018, Hong Kong
Society for Neuroscience 2018 Annual Meeting, November 3-7, 2018, San Diego, CA
2017
1st Pan American Parkinson’s Disease and Movement Disorders Congress, February 24-26, 2017, Miami, Florida
The 69th Annual American Academy for Neurology Meeting, April 22-28, 2017, Boston
Dystonia Europe 24th Annual Patient Support Group Conference, May 12-14, 2017, Rome, Italy
21st International Congress of Parkinson’s Disease and Movement Disorders, June 4-8, 2017, Vancouver, British Columbia, Canada
XXII World Congress on Parkinson Disease and Related Disorders, November 12-15, 2017, Ho Chi Minh City, Viet Nam
2016
Dystonia Medical Research Foundation Myoclonus-Dystonia Workshop: 18-19 February 2016, Miami, FL
Seventh Dystonia Coalition Meeting: 3-4 March 2016, Rockville, MD
68th American Academy for Neuroscience Annual Meeting: 15-21 April 2016, Vancouver, British Columbia, Canada
3rd International Congress on Treatment of Dystonia: 4-7 May 2016, Hannover, Germany
Parkinson's Disease Foundation's Dystonia Workshop: 9-10 June 2016, Chicago, IL
20th International Congress of Parkinson's Disease and Movement Disorders: 19-23 June 2016, Berlin, Germany
4th Conference on Clinical Research for Rare Diseases: 3 November 2016, Washington, DC
Soceity for Neuroscience's 46th Annual Meeting: 12-16 November 2016, San Diego, CA
2015
Tyler's Hope Think Tank: 5-6 March 2015, Orlando, FL
67th American Academy for Neuroscience Annual Meeting: 18-25 April 2015, Washington, DC
19th International Congress of Parkinson's Disease and Movement Disorders: 14-18 June 2015, San Diego, CA
Society for Neuroscience's 45th Annual Meeting: 17-21 October 2015, Chicago, IL
strong>2014
66th American Academy of Neurology (AAN) Annual Meeting: 26 April - 3 May 2014, Philadelphia, PA
The 18th International Congress of Parkinson's Disease and Movement Disorders: 8-12 June 2014, Stockholm, Sweden
Sixth Annual Dystonia Coalition Meeting: 6-7 November 2014, St. Louis, MO
Society for Neuroscience Annual Meeting: 15-19 November 2014, Washington, DC
2013
65th American Academy of Neurology (AAN) Annual Meeting: 16-23 March 2013, San Diego, CA
Next Pilot Project And Career Development Applications: Due 15 May 2013.
The 17th International Congress of Parkinson’s Disease and Movement Disorders: 16-20 June 2013, Sydney, Australia
Fifth Annual Dystonia Coalition Meeting: 16-17 October 2013, Atlanta, GA
The Fall Voice Conference: 17-19 October, Atlanta, GA
Society for Neuroscience Annual Meeting: 9-13 November 2013, San Diego, CA
2012
BSDPF Symposium for Patients and Caregivers: Educate & Empower: Learn the Latest Treatments, Therapies, Coping Techniques and Research: 28 February 2012, New York, NY
64th American Academy of Neurology (AAN) Annual Meeting: 21-28 April 2012, New Orleans, LA
Workshop on Designing Clinical Trials for Dystonia: 30-31 May 2012, Bethesda, MD
Next Pilot Project And Career Development Applications Due: 1, June 2012
Summary and Highlights of the 5th International Dystonia Symposium
The 16th International Congress of Parkinson’s Disease and Movement Disorders: 17-21 June 2012, Dublin, Ireland
Fourth Annual Dystonia Coalition Meeting: 13-14 September 2012, Chicago, IL
Society for Neuroscience Annual Meeting: 13-17 October 2012, New Orleans, LA
Next Pilot Project And Career Development Applications Due: 15 November 2012
2011
BEBRF Blepharospasm, Meige, Hemifacial Spasm Symposium: 19 February 2011, St. Louis, MO
- Saturday, 9:00am – 3:00PM
Patients, Families And Doctors Invited To Attend
Washington University
Speakers: Dr. John Holds, Dr. Joel Perlmutter
St. Louis, MO
Free Registration, Continental Breakfast And Lunch For Each Symposium
More Information And Online Registration At www.blepharospasm.org/Blepharm.html Or Contact BEBRF@Blepharospasm.org
Pilot Project And Career Development Applications Due: 1 April 2011
63rd American Academy of Neurology (AAN) Annual Meeting: 9-16 April 2011, Honolulu, HI
Morning Seminar 6SM.003: The Dystonias: Diagnosis, Treatment and Update on the Causes: 14 April 2011, Honolulu HI
DMRF Dystonia Educational Forum: 29 April 2011, Swedish Medical Center, Seattle, WA
BSDPF Symposium: Finding Balance: Treatments, Therapies, Coping Techniques And Current Research For Patients With Dystonia And Parkinson's Disease: 2 May 2011, New York, NY
-
Monday, 8:45am-3:00pm
The Graduate Center
365 Fifth Avenue
(Between 34th And 35th Streets)
New York City
A Prestigious Panel Made Up Of A Neurologist, Neurosurgeon, Researcher, Physical Therapist And Psychiatrist Make Up One Portion Of The Program. The Second Portion Offers Interactive Classes Of Nutrition, Yoga, Massage Therapy And Meditation/T'ai Chi Chih. This Event Is Open To Patients Living With Dystonia And Parkinson Disease, Caregivers, Students And Medical Professionals. This Combination Of Lectures And Interactive Classes Offers An All Encompassing Experience. Each Guest Will Also Receive Complimentary Breakfast And Lunch. There Will Be No Charge For This Event As A Service To Our Community.
3rd Biennial Workshop on Dystonia: "Dystonia and Parkinson’s disease: the dopamine connection" 20-21 May 2011, Villa Mondragone, Monte Porzio Catone (Rome), Italy
The 15th International Congress of Parkinson's Disease and Movement Disorders: 5-9 June 2011, Toronto, ON Canada
BEBRF Blepharospasm, Meige, Hemifacial Spasm Symposium: 16 July 2011, Silver Spring, MD
-
Saturday, 9:00am – 4:00pm
Patients, Families And Doctors Invited To Attend
Holy Cross University
Speakers: Dr. Mark Hallett, Dr. Neil Miller
Silver Spring, MD
Free Registration, Continental Breakfast And Lunch For Each Symposium
Caution about Getting Information from the Internet (The Dystonia Coalition agrees with the recommendation in a letter to the Editor of The New England Journal of Medicine (September 22, 2011))
5th International Dystonia Symposium: 20-22 October 2011, Barcelona, Spain
Society for Neuroscience Annual Meeting: 12-16 November 2011, Washington DC
Next Pilot Project And Career Development Applications Due: 30 November 2011
Focal Hand Dystonia study seeks volunteers: Determining the Efficacy of an Intervention in Focal Hand Dystonia with rTMS and Sensorimotor Retraining
2010
Bachmann Strauss Outlook: Dystonia Coalition Announcement (January 2010) 11NE
Next Pilot Project And Career Development Applications Due: 15 March 2010
American Academy of Neurology: 10-16 April 2010, Toronto, Ontario, Canada
Dinner Seminar 2DS.002: The Dystonias: Diagnosis, Treatment, and Update on Causes: 11 April 2010, Toronto, Ontario, Canada
Clinical Research Network for Dystonia: The Dystonia Coalition (April/May 2010)
First International Congress on Treatment of Dystonia: 6-8 May 2010, Hamburg, Germany
National Spasmodic Dysphonia Association Denver Regional Symposium: 8 May 2010, Aurora, CO
Dystonia Medical Research Foundation Deep Brain Stimulation Forum and Dystonia Symposium: 14-15 May 2010, San Francisco, CA
Tyler’s Hope 3rd Annual Think Tank on Novel Approaches to a Cure for Dyt1 Dystonia: 21 May 2010, Gainesville FL
The Movement Disorders Society Annual Meeting: 13-17 June 2010, Buenos Aires, Argentina
National Spasmodic Torticollis Association 21st Annual Symposium: 11-12 September 2010, Baltimore, MD
ST/Dystonia 13th Annual Symposium: 24-26 September 2010, Elizabeth City, NJ
Dystonia Medical Research Foundation Western Regional Symposium: 2 October 2010, Pasadena, CA
BEBRF Blepharospasm, Meige, Hemifacial Spasm Symposium: 2 October 2010, Salt Lake City, Utah
-
Saturday, 8:30am – 4:00pm
Patients, Families And Doctors Invited To Attend
Fort Douglas Officer’s Club On The Campus Of The University Of Utah
Program Directors: Dr. Bradley Katz, Dr. Kathleen Digre
Free Registration, Continental Breakfast And Lunch For Each Symposium
More Information And Online Registration At http://www.blepharospasm.org/Blepharm.html Or Contact BEBRF@Blepharospasm.or
Second Annual Dystonia Coalition Meeting: 21-22 October 2010, 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
Bachmann-Strauss Dystonia and Parkinson’s Foundation Think Tank: 1-2 November 2010, New York, NY
2009
NIH Announces Expansion of Rare Diseases Clinical Research Network (5 October, 2009)
NIH Grant Supports Coalition to Develop Better Dystonia Treatments (6 October, 2009)
NIH Awards New Grant to Develop Better Treatments for Focal Dystonias (October 2009)
Dystonia Coalition – Office of Rare Disease Research (October 2009)
NIH Awards New Grant to Develop Better Treatments for Focal Dystonias (9 November, 2009)
Research-Dystonia Coalition (November 2009)
The Voice: Inaugural Meeting of the Dystonia Coalition (December 2009)
A New Research Partnership (December 2009)
Inaugural Dystonia Coalition Meeting (5 November 2009)
- 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