Wednesday, July 1, 2009

DMRF eNews - July 2009

DMRF eNews

July 2009 -To ensure deliverability, please add
enewsletter@dystonia-foundation.org to your address book.

Families share your stories

John H. Menkes
Children & Family Dystonia Symposium

August 14-16, 2009 – Chicago, Illinois

Where your kids can just be kids…

Where your questions will be answered…

Where everyone understands what it’s like to raise a child with
dystonia.

Join us for a special meeting for affected children, teens, and their
families. This is a great time to come together to share and learn from the
experts and one another. This year, we are particularly pleased to
announce that this great event has been named in memory and honor of John
H. Menkes, MD, founding Scientific Director of the DMRF.

[http://www.dystonia-foundation.org/pages/5th_children___family_symposium/543.php]
Click here to learn more!

A limited number of scholarships to assist with the cost of attending the
symposium are available. For more information, contact 312-755-0198.

Please note: The DMRF has negotiated a special hotel rate of $159 per
night for a limited number of rooms for Symposium attendees. To take
advantage of the special rate, book early, no later than July 20th.

Keep the stories coming...

The DMRF received an outporing of emails from many of you during Dystonia
Awareness Week and the month of June. Thank you to everyone who has shared
their dystonia experiences to raise awareness. Your voices, your stories
not only shed light on dystonia but also often provide comfort to others
experiencing the same. Let's keep the momentum going, continuing on with
our combined efforts to make a difference.

Join us at [http://thedmrf.ning.com ] http://thedmrf.ning.com to share
your story or respond to others. Your one act may change another's life
for the good.

So act now!

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

One person making a difference...

We are pleased to announce that Interstate Hotels & Resorts, the world
leader in hotel management, has taken DMRF on as a charitable partner
through their Interstate Gives Back (IGB) program. One of Interstate
Hotels & Resorts’ seven core values is Community Service, which is
carried out company-wide at two corporate offices in Arlington, Virginia
and Irving, Texas, and in cities nation-wide where Interstate properties
are located.

The partnership was officially launched on Friday, June 19^th and was well
attended by many Interstate employees at their offices in Virginia. The
DMRF would like to extend our many thanks to member Hunter Webster who
spearheaded this partnership. During the launch, Hunter very candidly
discussed his own experiences with dystonia and fielded a myriad of
questions from his colleagues.

Do you have ideas about how you can make a difference? Please email
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org today!

...and another

Many are probably aware that member Brian Stephenson will be running in
the Bank of America Chicago Marathon on behalf of the DMRF in October.
Brian very graciously agreed to share his story and his progress in a
training blog. Please visit [http://dmrfaccidentalhero.blogspot.com]
http://dmrfaccidentalhero.blogspot.com to see how he is faring, what
motivates and inspires him, and why he runs - he runs because he can. And
he runs for others who can’t.

Would you like to join Brian in his efforts

to make a difference?

Show your support today.

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

Did you know?

We recently declared the week of June 29th has been officially declared
DMRF Support Group Leader Appreciation Week!

Support group leaders are amazing people. Despite their own challenges in
living with dystonia, they work tirelessly to help others affected by
dystonia. They are the backbone of the DMRF and the work they do is vital
to the Foundation’s mission and our ability to really provide support to
patients and their families.

It is fitting that this recognition be the week our nation celebrates the
Independence Day holiday – as support group leaders are key to supporting
those affected by dystonia to achieve independence from dystonia. Through
their ongoing efforts support group leaders provide opportunities for
education and learning to take place. Every day, these unsung heroes are
helping people connect with other people – providing them with a precious
gift – knowing that they are not alone in this battle and that the
Foundation is here for them and their families. Because of these leaders,
many people now know that dystonia does not define them.

It is not too late to reach out and express your appreciation to a support
group leader today.

A unique opportunity

We ask that you consider becoming a brain donor and give dystonia
researchers the unique opportunity to analyze the inner workings of the
dystonia brain. Both those who have dystonia, as well as those who do not
are encouraged to enroll so that researchers can compare and contrast brain
tissue.

What causes this complex disorder to occur? Your generous and selfless
donations can help us answer that question and many more, and lead us
closer to a cure.

If you are interested in learning more about what is involved in
registering as a brain donor, please contact Martha Murphy, Brain Bank
Liaison at [mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or phone 800.377.3978.

Important: Please make sure to provide your full name, your postal mailing
address, your phone number(s) and your e-mail address (if applicable) so
that we can more easily contact you and mail you information.

Juice Newton Benefit Concert

GRAMMY AWARD-WINNING RECORDING ARTIST JUICE NEWTON PERFORMS IN DYSTONIA
BENEFIT CONCERT IN SAN DIEGO. Mark your calendars for Sat., 10/3/09 at
7:00 p.m. because that is the date when Juice Newton (known for such hits
as “Queen of Hearts” and “Angel of the Morning”) will take the
stage at the beautiful Joan Kroc Theatre in San Diego, CA to perform in a
concert to benefit dystonia.

The concert is sponsored by the Dystonia Support & Advocacy Group of San
Diego County and proceeds will be equally divided between the DMRF and the
NSDA. If you live in or near San Diego, this is a must-do event! If you
live farther away, this is the perfect time to plan a trip to San Diego.

Tickets are $25 and $40 and can be purchased at
[http://www.showboxoffice.com/] http://www.showboxoffice.com/ or by phoning
Paul Fowler at 858-922-8309. If you absolutely cannot make it to the
concert, but would like to support this event by making a contribution, all
donations will be greatly appreciated.

Please contact Martha Murphy, support group leader/founder, at
[mailto:tmmurphy@juno.com] tmmurphy@juno.com or call 619.582.1961 for more
information if you are interested in making a donation or need additional
information. Thank you.

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

DMRF Rewind

Recently volunteers Nancy and Larry Present hosted the 3^rd annual
“Moving Forward” St Louis Dystonia Walk-a-thon. As expected the event
was a great success raising with approximately 125 walkers in attendance
and raising over $15,000. Over the three years of this event, the walk has
raised over $60,000 for dystonia research and awareness. Please join us in
congratulating the Presents for their continued hard work and dedication to
the DMRF.

If you would like to organize a walk or event in your community, contact
[mailto:kanderson@dystonia-foudnation.org]
kanderson@dystonia-foudnation.org.

Mark Your Calendars

August 10, 2009 - Dine Out for Dystonia (NJ) - Tortilla Press,
Collingswood, NJ

[http://www.dystonia-foundation.org/pages/view_event/225.php?id=168]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=168

August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club

Come see Minnesota native and musician and DMRF Ambassador, Billy
McLaughlin (can you link to his website), perform following the first
annual MN Golf Classic.

For over twenty years, McLaughlin performed his intricate guitar
compositions for audiences around the world. His career was derailed when
he developed dystonia in his right hand. After doctors confirmed no current
treatments could fully restore the use of his hand, he took the
extraordinary step of relearning his music left handed.

The Golf Classic and Concert will be hosted at Gopher Hills Golf Course,
Cannon Falls, MN.

For more information and tickets, contact
[mailto:kanderson@dystonia-foundation.org]
kanderson@dystonia-foundation.org or register at
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524.

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

October 3, 2009 - Martini Open (OH)

More information coming soon!

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

[http://www.dystonia-foundation.org/pages/view_event/225.php?id=72]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=72

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

More information coming soon!

October 29, 2009 - Tricky Tray (NJ)

More information coming soon!


Happy 4th of July!

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