DMRF eNews - September 2009

DMRF eNews

September 2009 - To ensure deliverability, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.

Symposium Rewind

[http://www.youtube.com/user/cemiwire]

[http://www.youtube.com/user/cemiwire] Click on the picture to view the
video.

We're sure that all in attendance would agree that the 2009 John H. Menkes
Children and Family Dystonia Symposium was a great success! Thank you to
all in attendance who helped to make this such a special event.

A special thank you to all of the families who signed up for the Families
Fighting for a Cure Fellowship Challenge. These families joined the fight
and will be raising funds in support of a $50,000 fellowship to support
promising young investigators working in the field of dystonia.

Join the battle! Become a family fighting for a cure. No effort is too
small, every amount gets us that much closer.

For more information on how to become a fighter, email Krista, the DMRF
Manager of Special Events, at
[mailto:kanderson@dystonia-foundation.org]
kanderson@dystonia-foundation.org.

Back to school tips and tricks

It's that time of year again. Are you looking for tips and tricks on how
to prepare your child for the upcoming school year?

Drop us a line if you would be interested in receiving the presentation
slides from the very imformative Educational Rights at this year's
symposium. Look for an announcement on the DMRF website on this important
topic.

Email [mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org today.

The DMRF is also pleased to announce the release of

Kids Like Me:

An Interactive Program for Children with Dystonia

This DVD is designed for children aged 8-12. The purpose is to give kids
a tool to help them better understand dystonia in a fun, engaging format.

[https://dystonia.securesites.net/dystonia/pages/videos_tapes_cd_s/274.php]
Order your FREE copy of Kids Like Me today!

Stay in touch

In today's world,we are always looking for ways to make our lives easier
while staying connected. With family and friends living in all parts of
the country and around the world, what better way to stay in touch than
through social networks.

If you have not done so already, we invite you to join us on the DMRF
social network scene. These forums provide a great way for you to stay
connected, stay in touch and stay informed.

Dystonia Website:

[http://www.dystonia-foundation.org] http://www.dystonia-foundation.org

Facebook: Keyword "dystonia friend"

Myspace: [http://www.myspace.com/thedmrf] http://www.myspace.com/thedmrf

Ning: [http://thedmrf.ning.com] http://thedmrf.ning.com

YouTube: [http://www.youtube.com/user/cemiwire]
http://www.youtube.com/user/cemiwire

Twitter: [http://twitter.com/dmrf] http://twitter.com/dmrf

Access the eNews 24 hours a day, seven days a week at
[http://dmrfenews.blogspot.com] http://dmrfenews.blogspot.com

Want to hear what's going on at the Foundation and in the dystonia
community? Visit DMRF Insights to learn more about how the Foundation is
carrying out our mission of research, awareness, education, advocacy and
support.

[http://dmrfinsights.blogspot.com] http://dmrfinsights.blogspot.com

Are you looking for an easy way to share this information with others?

[https://dystonia.securesites.net/dystonia/pages/awareness_materials/276.php]
Order the DMRF Tweets Bookmark today.

Advocacy Update

Just prior to adjourning for the August congressional recess, key
legislators in the U.S House of Representatives began debating the type of
generic biologic product approval pathway that would be included in the
House healthcare reform package.

The dystonia patient community supports the bipartisan approval pathway
that was crafted by Congresswoman Anna Eshoo (D-CA-14th) and Congressman
Joe Barton (R-TX-6th) which favors patient safety above all else, the
Pathway for Biosimilars Act (H.R. 1548). This legislation contains strict
protocols to ensure the safety of treatments and even has specific
additional standards regarding the development of dangerous biologic
products, like botulinumtoxin.

During the debate on Capitol Hill, dystonia advocates contacted their
representatives and urged them to support H.R. 1548’s inclusion in the
healthcare reform package. Thanks to the groundswell of support, H.R.
1548’s strict safety provisions were adopted after a narrow, non-partisan
vote.

While this is a meaningful victory for the dystonia patient community,
dystonia advocates will have additional work ahead of them when Congress
reconvenes in early September. More outreach and education will be needed
to advance H.R. 1548’s patient safety standards through the legislative
process and an organized push will begin to see that dystonia is added to
the list of conditions eligible for study through the Department of
Defense’s Peer-Reviewed Medical Research Program.

For additional information on the DMRF’s legislative agenda or to
identify yourself as a dystonia advocate, please
[http://www.dystonia-foundation.org/pages/become_a_dystonia_advocate/165.php]
go to the DMRF website and visit the advocacy section.

Junior Advisory Council

Are you a young person (or young at heart) who wants to become more
involved with the Foundation? Let's talk.

Send us an email at [mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org.

We'd love to hear from you!

Looking for ways to help?

Are you looking for ways to help move the DMRF's mission of research,
awareness, advocacy and support forward? Consider a letter writing
campaign, a great way to engage family and friends in the work of the DMRF.

Would you like more information on how to get one started?

Email [mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org for more information on how to get your
letter writing campaign started.

Become a brain donor and make a difference!

The donation of precious tissue and organs is a selfless act that can
dramatically improve the quality of life of others. In a neurological
disorder such as dystonia, brain donors are desperately needed! Brain
tissue is an extremely valuable commodity that researchers require to help
uncover important clues about this complex disorder.

We are in need of brain donors who have dystonia, as well as those who do
not have dystonia, and we encourage family members where dystonia is
present to also register as brain donors as well (even if they don’t
exhibit symptoms). The Dystonia Medical Research Foundation has partnered
with the NICHD Brain & Tissue Bank for Developmental Disorders at the
University of Maryland to make this important research possible.

There is no cost to donors or to their families, no disruption in funeral
or memorial services and brain recovery does not affect the outward
appearance of the donor.

Registering in advance as a brain donor helps to ensure that a successful
and timely recovery will take place after we are gone. This registration is
separate and apart from regular organ or tissue donation, through the state
where you live, and special consent forms must be signed with the
University of Maryland!

Please contact Martha Murphy, Brain Bank Liaison
at [mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or by phoning 1-800-377-DYST (3978) or
312-755-0198. We will need to postal mail you information so it is very
important that you include your full legal name, postal mailing address,
phone number(s) where you can be reached, and your e-mail address (if
applicable).

We are happy to answer any questions that you may have and help guide you
through the registration process. We greatly appreciate those of you who
are already registered brain donors…you are providing a very special gift
to the dystonia community!

Mark Your Calendars

September 19, 2009 - Dystonia Awareness Jamboree
(OK)

[http://www.dystonia-foundation.org/pages/view_event/225.php?id=166]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=166

September 26, 2009 - Dystance for Dystonia (WA)

This is a great opportunity for family and friends withing the Puget Sound
area to gather for a day of dystonia awareness and fundraising. The day
will be filled with entertainment for all ages including a pirate,
balloons, raffles, goodie bags and more.

[http://www.pugetsounddystonia.com] http://www.pugetsounddystonia.com

October 3, 2009 - PLAYING WITH THE QUEEN OF HEARTS, A BENEFIT CONCERT FOR DYSTONIA (CA)

The concert will be held in San Diego, CA on Sat., 10/3/09 at 7:00 p.m.
and will star Grammy Award-winning recording artist JUICE NEWTON. Juice is
known for such timeless hits as “Angel of the Morning,” “Queen of
Hearts” and “The Sweetest Thing.” Proceeds from the concert will be
equally divided between the Dystonia Medical Research Foundation and the
National Spasmodic Dysphonia Association and directed to fund critical
dystonia research.

Tickets are $25 and $40 and available through
[http://www.showboxoffice.com] www.showboxoffice.com or by contacting
Paul Fowler at [mailto:sdvoicehelp@earthlink.net]
sdvoicehelp@earthlink.net or 858-922-8309.

October 3, 2009 - Martini Open (OH)

More information coming soon!

October 11, 2009 - NJ Dogs for Dystonia (NJ)

Join Joanna, Janice, Len and others as they host the 4th Annual Dogs for
Dystonia dog walk in NJ. The event will be held at Turkey Swamp Park,
Freehold, NJ, on Sunday, October 11, 2009, from noon to 3 PM.
[http://www.dogsfordystonia.com/] http://www.dogsfordystonia.com/

October 11, 2009 - Bank of America Chicago Marathon (IL)
Support Brian Stephenson and Julie Zaia as they run on behalf of the
Foundation during this year's marathon.

For more on Brian's story, visit

[http://dmrfaccidentalhero.blogspot.com/]
http://dmrfaccidentalhero.blogspot.com/

To support his run, visit

[http://www.rsvpbook.com/event.php?474735]
http://www.rsvpbook.com/event.php?474735

For more on Julie's story, visit

[http://juliezaia.wordpress.com/] http://juliezaia.wordpress.com/

To support her run, visit

[http://www.rsvpbook.com/event.php?407843]
http://www.rsvpbook.com/event.php?407843

October 25, 2009 - 5th Annual Basket Bash (IL)

More details to follow!

October 26, 2009 - 3rd Annual Dystonia Golf & Tennis Classic (DC)

[http://www.dystonia-foundation.org/pages/view_event/225.php?id=87]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=87

October 29, 2009 - 16th Annual NJ Tricky Tray (NJ)

[http://www.dystonia-foundation.org/pages/view_event/225.php?id=77]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=77

November 14, 2009 - Carson's Community Day (Nationwide)

Email Emma at [mailto:epinto@dystonia-foundation.org]
epinto@dystonia-foundation.org for more information.

December 23, 2009 - 6th Annual Help Find A Cure for Dystonia (PA)

[http://www.dystonia-foundation.org/pages/view_event/225.php?id=73]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=73

Quick and easy fundraising idea

Do you shop online? Are you looking for an easy way to support the
efforts of the DMRF? iGive might be just the program for you! With over
700 brand name stores, a portion of your online purchases can be donated to
the Foundation.

Click here for more information and to sign up:

[http://www.igive.com/welcome/warmwelcome.cfm?c=1413]
http://www.igive.com/welcome/warmwelcome.cfm?c=1413

Happy Labor Day!

Order your DMRF tshirt today!

Show your support and raise awareness. Order your DMRF tshirt today for
$20.

Sizes available:

Children's S, M, L

(available in grey & white)

Women's S, M, L and XL

(available in blue & white)

Women's XXL

(available in white only)

Men's S, M, L, XL and 2X

(available in grey & white)

Please note that women's shirts are fitted and tend to run small. If
unsure of sizing, please order an equivalent size in Men's.

To order your shirt,

[https://dystonia.securesites.net/dystonia/pages/merchandise/277.php]
click here

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

[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org

Would you like to access the newsletter 24/7?

[http://dmrfenews.blogspot.com/] dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999.

Are you an iPhone

or iTouch user?

If so, check out the DMRF's new app to stay up-to-date on the latest news
from the Foundation and the dystonia community.

To get the app, visit the iTunes App store and search for "DMRF app".

Join us on one of our social networks:

[http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711]

[http://www.myspace.com/thedmrf]

[http://thedmrf.ning.com/]

[http://twitter.com/dmrf]

Contact Information

One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978

[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org/] www.dystonia-foundation.org
© 2009 DMRF