DMRF eNews - January 2010

DMRF eNews

January 2010 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
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Happy New Year
From everyone at the DMRF, 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
[http://www.dystonia-foundation.org/2009Review] milestones from last year.

· The wonderful
[http://www.dystonia-foundation.org/pages/research_in_2009/148.php]
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 [http://www.youtube.com/watch?v=Mc4CZAD5rw8] 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
[http://www.dystonia-foundation.org/pages/dystonia_coalition_obtains_ord_grant/362.php]
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
[http://www.dystonia-foundation.org/pages/dac_paves_way_for_new_research_funding/367.php]
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
[http://www.rsvpbook.com/event.php?470398] 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.

Upcoming Events

1/30/10 [http://www.rsvpbook.com/event.php?406573] Dystonia Patient
Educational Symposium
2/12/10 [http://www.rsvpbook.com/event.php?449115] MN Sleigh Ride,
Dinner and Concert

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at

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Contact Information

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© 2009 DMRF