DMRF eNews - August 2009

DMRF eNews

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

There is still time!

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.

This year, we are particularly proud that this great event has been named
in memory and in honor of John H. Menkes, MD, founding Scientific Director
of the DMRF. Dr. Menkes was a pediatric neurologist who understood the
importance of not only working with the child, but also working with the
family. This symposium helps children affected by dystonia and their
families develop networks of friends who understand completely what it is
like to live with dystonia. These networks are a treasured, constant
source of support creating ties that will last a lifetime.

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

For more information about the symposium, contact 312-755-0198.

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? If so, stay tuned for
the September issue of the DMRF eNews.

Dystonia Twitter Awareness Day

On July 22nd, @DMRF tweeted about #dystonia as did many others. Our
goal? To raise awareness and become a Twitter trend...

...AND WE DID IT!

Thank you to everyone who participated that day. Together, we made a
remarkable impact on the Twitter community. Together, we made a
difference.

If you have not already done so, consider tweeting about #dystonia. By
including the "#" sign, you are making it easier for people to follow the
conversation.

Follow @dmrf for information, updates, news and events.

Special note: The DMRF will have a Twitter correspondent at the John H.
Menkes Children & Family Symposium. Stay tuned to @dmrf on August 14-16 to
stay abreast of the happenings.

Welcome to the Oregon Dystonia Support Group

Are you living with dystonia and feel like you are the only one? Consider
coming out to join the first meeting of the Oregon Dystonia Support Group.

Saturday, August 29, 2009 at 1pm

St. Helen's Hall, Episcopal Church

Downtown Bend

(next door to Trinity on Wall Street)

231 NW Idaho Avenue

Bend, OR

This will be a meet & greet/care & share get together. Questions?
Contact Pat Croll at 541.388.2577

Don't live in Oregon, but want to be part of a support group in your area?
Visit
[http://www.dystonia-foundation.org/pages/find_a_support_group/233.php]
http://www.dystonia-foundation.org/pages/find_a_support_group/233.php for
more information.

See how the New Jersey Chapter is helping to move our mission forward

The New Jersey Chapter has been a great champion of the DMRF and the
dystonia community. For the past 14 years, the Chapter has held their
annual fundraising event, the Tricky Tray Dinner, a great evening full of
friends and fun.

This year's dinner is on Thursday, October 29th at the Westmount Country
Club in Woodland Park, New Jersey. The doors open at 6pm and tickets are
$45.

For more information,

please call Judy Bozza at 201.943.8036.

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 hosting a fundraising
event in your community.

Would you like more information on how to get one started? Email Krista
at [mailto:kanderson@dystonia-foundation.org]
kanderson@dystonia-foundation.org.

A unique opportunity

Most of us take our brains for granted but they are extremely complex
organs that make it possible for us to navigate through every aspect of our
daily lives. Our brains can also play an incredibly valuable role when we
are gone. By studying brain tissue, dystonia researchers are provided with
a unique opportunity to learn more about our disorder and what goes awry in
this intricate structure that causes the involuntary movements and muscle
spasms to occur.

RESEARCHERS NEED YOUR HELP!! Please contact us now to find out what is
involved in becoming a registered brain donor. Important: Just because you
have indicated on your driver’s license that you wish to donate your
organs and tissue upon death, that does NOT mean that you are automatically
registered as a brain donor and that your brain will go to dystonia
research. There is a separate process and forms need to be completed
through the NICHD Brain & Tissue Bank for Developmental Disorders at the
University of Maryland. The Dystonia Medical Research Foundation partners
with their facility and we will provide you with information about how the
program works and help you with the registration process.

To learn more, please provide us with your FULL NAME, POSTAL MAILING
ADDRESS, PHONE NUMBER AND E-MAIL ADDRESS (if applicable) and e-mail us at
[mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or phone 800.377.3978 so that we can
provide you with the necessary information. Your selfless contribution
means so much to so many!

Juice Newton Benefit Concert

GRAMMY AWARD-WINNING RECORDING ARTIST JUICE NEWTON PERFORMS FOR OUR CAUSE
ONCE AGAIN! On SATURDAY, OCTOBER 3 at 7:00 p.m. JUICE NEWTON known for
such hits as “Angel of the Morning” and “Queen of Hearts” will take
the stage for the second time at the beautiful Joan Kroc Theatre in San
Diego, CA to help raise awareness about dystonia and also crucial funds for
dystonia research.

This is a fundraising event for the Dystonia Support & Advocacy Group of
San Diego County. If you live anywhere in Southern California, or even
farther away, consider planning a trip to San Diego to enjoy this wonderful
evening of entertainment and inspiration, and all that the city has to
offer.

Tickets are reasonably priced at $25 and $40 and can be purchased online
through a secure website at [http://www.showboxoffice.com/]
www.showboxoffice.com or by contacting Paul Fowler at
[mailto:sdvoicehelp@earthlink.net] sdvoicehelp@earthlink.net All seats in
the 600-seat theatre are very good and there are special seating
accommodations for those with mobility issues. Please contact Paul to make
arrangements for special seating. To see the theatre go to
[http://kroccenter.org/theatre] http://kroccenter.org/theatre

If you absolutely cannot attend the concert, please consider making a
charitable donation through Dystonia of San Diego to support dystonia
research. Please contact the group’s leader, Martha Murphy at
[mailto:tmmurphy@juno.com] tmmurphy@juno.com for more details on how to
make a donation. Receipts will be issued for donations and proceeds from
this event will be evenly divided between the Dystonia Medical Research
Foundation and the National Spasmodic Dysphonia Association and directed to
dystonia research. To learn more about Juice Newton please visit
[http://www.juicenewton.com/] www.juicenewton.com and
[http://www.juicenewtonfanclub.com/] www.juicenewtonfanclub.com To learn
more about the San Diego support group, visit
[http://www.dystoniaofsandiego.com/] www.dystoniaofsandiego.com

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

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.

August 22, 2009 - Changing Keys showing (CA) - Center for Spiritual Living

[http://www.changing-keys.com/node/26]
http://www.changing-keys.com/node/26

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!


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