Tuesday, January 5, 2010

Happy New Year from the DMRF

On behalf of the DMRF I want to wish everyone a Happy New Year. We are looking forward to continuing the momentum that the events of 2009 generated into 2010. There is much to be grateful for as we look back at the milestones from last year.

• The wonderful research projects supported by the DMRF in 2009. We are beginning to receive progress reports from the work funded by the Foundation last year and it is exciting to see results. We are always pleased with our fellowships – funding young investigators is so important.

Working in partnership with the Foundation for Dystonia Research, the DMRF launched a $1.8 million dollar research contract to identify and validate novel molecular targets for dystonia drug discovery and development. This project is possible because of the many years of research the DMRF has supported – including the DMRF funded discovery of the DYT1 gene in 1997. The first phase of this enormous scientific project was completed in 2009.

• Additionally, the DMRF is contracting for the development of a new animal model for dystonia. This is also important for drug discovery/development.

DMRF continues to hold discussions with pharma to engage them in dystonia. In 2009 a significant meetings were held and we are optimistic about the interest expressed in dystonia – developing into additional, new treatments for dystonia.

DMRF was pleased to join with Tyler’s Hope in launching a patient registry for DYT1 dystonia – another important element in getting new treatments on the market.

• Our scientific meetings continue to be important. Last year, the DMRF hosted a meeting for young investigators, a meeting on myclonus dystonia and a number of other meetings to help support the development of the NIH/ORD Dystonia Coalition program.

• The Children & Family Symposium was a major success – with many new families learning that they are not alone. This combined with our ongoing educational efforts and the fabulous support/education efforts of our support groups has provided accurate information to thousands of people.

• The Dystonia Coalition – the clinical research program approved by NIH is a major step forward for the community. The DMRF is proud to serve as an administrative center for this important program – providing administrative support for meetings, payments to the clinical sites, pilot projects and this past year, to have co-sponsored the Career Development Award.

• Last – but certainly not least – we are grateful to join with our advocacy partners the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association and the National Spasmodic Torticollis Assocition in celebrating the addition of dystonia to the list of eligible diseases for funding through the Congressionally Directed Medical Research Program. This was a wonderful way to end the year.

2010 looks to be a year of continued progress. The research grant applications recently submitted look good – these will be reviewed in February when our Medical & Scientific Advisory Council will be meeting. We will be launching new scientific exploration through our contract program and look forward to sponsoring and participating in key scientific meetings throughout the year.

We also look forward to continuing our community education programs, webinars, a western regional meeting and another successful Advocacy Day this spring.

Achieving our goal of a cure for all forms of dystonia can’t be done alone. We appreciate the partnerships we have globally and thank all of you for your support of the DMRF. We look forward to sharing with you the progress of the coming year and to hearing from you about how we can help you until that wonderful day when our work is finished.

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