Dystonia Coalition Obtains ORD Grant
Unprecedented monies to support dystonia research
 
The Dystonia Coalition is a collaboration of scientists, institutions, and patient organizations formed to advance the pace of clinical research for the dystonias.
 
In October, Officials at the Office of Rare Disorders (ORD) at the National Institutes of Health (NIH) announced the funding of a five year award for the Dystonia Coalition to advance clinical research on primary focal dystonias including cervical dystonia, spasmodic dysphonia/laryngeal dystonia, blepharospasm, and others. Leading the Coalition will be H. A. Jinnah, MD, PhD, Professor of Neurology and Human Genetics at Emory University in Atlanta, Georgia.
 
The $6.2 million award will allow the Dystonia Coalition to cultivate a better understanding of the primary focal dystonias and find better therapies. This includes projects to develop a better understanding of their natural history, establish instruments for monitoring symptom severity in clinical trials, and develop proper diagnostic criteria. The creation of a biorepository to store biological samples to support future research is also planned, which will make these resources available to investigators worldwide.
 

The DMRF will play an integral role by providing logistical and planning support for the Coalition. The DMRF is well-poised to serve in this capacity as it is the largest and most established patient support organization devoted to dystonia.

DMRF Co-Vice President of Science Deb Kilpatrick, PhD, who lives with cervical dystonia says, "The NIH award to form the Dystonia Coalition is a truly landmark event for DMRF, its members, and most importantly, dystonia patients and their caregivers. We should all be very proud about what has been accomplished and enthusiastic about what is to come."
 
 


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