June 2009 -To ensure deliverability, please add
enewsletter@dystonia-foundation.org to your address book.
National Dystonia Awareness Week
June 1 - 7
Our story...
For more than 30 years, the Dystonia Medical Research Foundation has
worked to wipe out dystonia. Our efforts began long before most people,
including healthcare professionals, really knew or cared about dystonia.
The progress of the dystonia community is directly attributable to those of
you willing to share your stories and your insights. Whether it is on
television or in a written publication in a large city or a small
community, or perhaps as importantly by talking with someone you know or a
complete stranger in the checkout line at a grocery store – you are
making a difference. Awareness is a process – every piece important,
every person’s story contributing to our goal of helping others
understand what dystonia is and how we intend to fight it.
This is National Dystonia Awareness Week. We encourage you to continue to
tell your stories and then let us know of your activities. Let’s share
our awareness experiences and successes with each other. We can’t wait
to hear of your activities this week. Each and every interaction is
important for together we are making a difference.
...Your stories
Visit [http://thedmrf.ning.com/] http://thedmrf.ning.com or email us at
[mailto:dystonia@dystonia-foundation.org?subject=I'd like to share my
story] dystonia@dystonia-foundation.org and share your story.
If you'd like to share your story with others, consider participating in
the 2009 DMRF Awareness Week Campaign.
Email [mailto:enewsletter@dystonia-foudnation.org]
enewsletter@dystonia-foudnation.org today and we will help you create and
send your story to your loved ones. This is a great way to build awareness
and generate support for our work in the dystonia community.
Brian's story
Brian began to first experience symptoms as early as 10 years old. He
went from being a happy, active child to a young adult who tolerated the
pain because he just wanted a normal life. It took several years and
numerous visits to doctors offices before he was finally diagnosed. For
Brian, deep brain stimulation (DBS) worked and opened a world of
possibilities.
In 2009, Brian will be running in the Bank of America Chicago Marathon on
behalf of the Foundation. He has refused to let dystonia stop him from
achieving his dreams and goals. With the loving support of family and
friends, he runs because he can. And he runs for others who can’t. He
runs because he is dedicated to living his life to the fullest and to
making a difference where he can.
Would you like to keep up-to-date with Brian's progress as he prepares for
the marathon?
Visit his training blog at [http://dmrfaccidentalhero.blogspot.com]
http://dmrfaccidentalhero.blogspot.com.
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
Together we will write the next chapter...
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 is a special meeting for affected children, teens, and their
families. The purpose of the symposium is to bring families together to
learn about dystonia and the DMRF, interact with experts, and find support
among one another. There will be special sessions for children under 13,
teens, siblings, and parents. The event is 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
...and with your help, we will work to find the answers to write a new
ending!
Brain donation provides a unique opportunity for individuals to truly make
an invaluable contribution to dystonia research. DMRF has established a
partnership with the NICHD Brain & Tissue Bank for Developmental Disorders
at the University of Maryland and recovered tissue is preserved at their
facility and made available for study by qualified dystonia researchers.
The registration process is easy and just requires that some forms be
filled out and signed. There is no cost involved.
If you would like to learn more about this very special program, please
contact Martha Murphy, Brain Bank Liaison at
[mailto:brainbank@dystonia-foundation.org?subject=I'd like more
information] brainbank@dystonia-foundation.org or call 800-377-3978 or
312-755-0198.
Please be certain to provide your full name, your postal mailing address
and your phone number(s) so that we can mail you information and
communicate with you more easily.
Juice Newton Benefit Concert
JUICE NEWTON IN PERFORMS IN CONCERT TO SUPPORT OUR CAUSE!
Grammy award-winning recording artist Juice Newton (“Queen of Hearts,”
“Angel of the Morning”) will once again perform as part of a benefit
concert in San Diego to help raise funds and awareness for dystonia. The
concert will take place at the beautiful 600-seat Joan Kroc Theatre in San
Diego on Saturday, October 3, 2009 at 7:00 p.m. Talented local entertainer
Carol Curtis will serve as the opening act.
This is a Dystonia Support & Advocacy Group of San Diego County event and
the group is affiliated with both DMRF & NSDA. Ticket prices are $25 and
$40 and all proceeds will be divided equally between DMRF and NSDA.
Special pre-sale tickets (ONLY FOR THOSE WITH DYSTONIA) will go on sale on
June 1^st at [http://www.showboxoffice.com/] www.showboxoffice.com All
other tickets will go on sale on July 1^st.
If you cannot attend the show but would like to be a show sponsor or make
a contribution or if you have any questions, please contact Martha Murphy,
Group Leader/Founder at [mailto:tmmurphy@juno.com?subject=Juice Newton]
tmmurphy@juno.com or Paul Fowler, Event Chair at
[mailto:sdvoicehelp@earthlink.net?subject=Juice Newton]
sdvoicehelp@earthlink.net
For more information on Juice Newton, visit [http://www.juicenewton.com/]
www.juicenewton.com or [http://www.juicenewtonfanclub.com/]
www.juicenewtonfanclub.com
Mark Your Calendars
June 1st through 7th - Dystonia Awareness Week (Nationwide)
June 7, 2009 - Los Angeles Dystonia Support Group (CA) - USC University
Hospital
Email Barbara Ellis at [mailto:LADystoSupport@aol.com?subject=I'd like
more information] LADystoSupport@aol.com for more information.
August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524
Help Increase Awareness
Would you like to get involved with the foundation and help increase awareness and funding for dystonia in your community? DMRF has many event options to fit your community and your personality. If you would like to learn more, please contact kanderson@dystonia-foundation.org.
Show your support and raise awareness. During the month of June, get your
tshirt for the special price of $15. Starting July 1st, the price of the
shirt will increase to $20.
Sizes available:
Women's S, M, L and XL
Men's S, M, L, XL and 2X
To order your shirt, email Julie at [mailto:jmack@dystonia-foundation.org]
jmack@dystonia-foundation.org or call 312.755.0198. Please be prepared to
indicate the color shirt, size and method of payment.
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.
Join us on one of our social networks:
[http://www.facebook.com/inbox/?ref=mb]
[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
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