Dystonia News and Events: The Dystonia Coalition

Dystonia Coalition News and Events

2009 | 2010 | 2011 | 2012 | 2013

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

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

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 http://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.
  For More information Visit: http://www.dystonia-parkinson.org/symposium2011

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
  More information and online registration at http://www.blepharospasm.org/blepharm.html or contact BEBRF@blepharospasm.org

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

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

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

Department of Health and Human Services	National Institutes of Health.
The Dystonia Coalition is a part of NIH Rare Diseases Clinical Research Network (RDCRN). Funding and/or programmatic support for this project has been provided by the National Institute of Neurological Disorders and Stroke (NINDS) and the NIH Office of Rare Diseases Research (ORDR). Read Disclaimer >