MARK YOUR CALENDAR FOR SATURDAY, OCTOBER 2 AND JOIN US FOR AN ALL-DAY DYSTONIA PATIENT SYMPOSIUM AT THE HILTON IN PASADENA. THIS WILL BE A WONDERFUL OPPORTUNITY TO HEAR THE LATEST INFORMATION FROM SOME OF THE TOP MEDICAL PROFESSIONALS. THERE WILL ALSO BE AN OPTIONAL DINNER ON FRIDAY EVENING, OCTOBER 1. CHECK OUT THE SYMPOSIUM PAGE FOR MORE INFORMATION AS WE GET CLOSER TO THE DATE AND ALSO THE DMRF WEBSITE AT www.dystonia-foundation.org
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CHECK OUT THE NEW DYSTONIA ADVOCACY COALITION (DAN) WEBSITE BY LOGGING ONTO http://dystonia-advocacy.org/ AND KEEP UP-TO-DATE ON THE LATEST IN LEGISLATIVE ACTIVITIES, ISSUES, FIND OUT HOW TO CONTACT YOUR ELECTED OFFICIALS, ETC.
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Dystonia Coalition Obtains ORD Grant
Unprecedented monies to support dystonia research
The Dystonia Coalition (not to be confused with the Dystonia Advocacy Coalition or DAC) 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."
- American Dystonia Society
- Bachmann-Strauss Dystonia & Parkinson Foundation
- Benign Essential Blepharospasm Research Foundation
- DySTonia, Inc.
- Dystonia Medical Research Foundation
- National Spasmodic Dysphonia Association
- National Spasmodic Torticollis Association
- Tyler's Hope for a Dystonia Cure
- We Move
DYSTONIA INTERNATIONAL PATIENT REGISTRY - If you or any member of your family has tested positive for the DYT1 gene, then you are eligible and encouraged to participate in a patient registry. The Registry is a patient-reported, international, multi-center, disease or condition listing registry for patients and their families who carry the DYT-1 Dystonia gene; no experimental intervention is involved. A listing registry is “Data is collected in a naturalistic manner such that the management of patients is determined by the caregiver and patient together and NOT by the registry protocol.” To learn more and to submit your information to the registry, go to www.dipregistry.com
HAS DYSTONIA AFFECTED YOUR CAREER? If so, please consider taking this survey at http://www.surveymonkey.com/s/XW65QQX
VERY EXCITING NEWS: 12/21/09 - The Dystonia Medical Research Foundation (DMRF), a proud member of the Dystonia Advocacy Coalition (DAC), is pleased to announce the inclusion of dystonia on the list of diseases eligible for funding through the Congressionally Directed Medical Research Program. This achievement, reached after several years of tireless, collaborative efforts by the advocates of the DAC, now allows for members of the dystonia research community to apply for funds in support of their work.
The Congressional Directed Medical Research Program (CDMRP) is funded through the Department of Defense via annual Congressional legislation known as the Department Appropriations Act (the support is in response to requests by consumer advocates and disease survivors). CDMRP will issue a program announcement for 2010 funding opportunities, including dystonia.
The DMRF joins with the other DAC member organizations, the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association, and the National Spasmodic Torticollis Association, to advocate for all persons affected by dystonia and supports a legislative and policy agenda that meets the needs of the dystonia community.
Organizational members of the DAC will now work to promote this program to the dystonia research community to help advance dystonia research. |
Our Group is affiliated with the DMRF Click the logo to go to their site. 
