DMRF eNews - January 2010

DMRF eNews

January 2010 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.

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

[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

DMRF eNews - November 2009

DMRF eNews

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

NIH Announces Expansion of Rare Diseases Clinical Research Network
The DMRF is pleased to be joining other members of the recently
announced, National Institutes of Health (NIH) funded Dystonia Coalition
this week for its first annual meeting. The meeting will review the three
clinical projects supported by this cooperative agreement and provide an
opportunity for the dystonia foundations to present on what they are
looking for from this important effort. DMRF is honored to work with
Bachmann-Strauss Dystonia & Parkinson Foundation (BSDPF), the Benign
Essential Blepharospam Foundation (BEBRF), DySTonia, Inc. (DI), the
National Spasmodic Dysphonia Association (NSDA), the National Spasmodic
Torticollis Association (NSTA), Tyler ’s Hope and WE MOVE along with
Drs. Buz Jinnah, Joel Perlmutter, Cindy Comella and Christy Ludlow,
representatives from NINDS and many, many other leading clinical
researchers in fulfilling the promise of this program. Stay tuned for
additional information about this meeting. Visit the
[http://dmrfinsights.blogspot.com/] DMRF Insights Blog next week to learn
more.

DMRF Funded Research in 2009
Check out the DMRF funded research projects for 2009. We are proud of
the work being carried out by these investigators and look forward to
projects presented for next year.

For more information about this research, please
[http://www.dystonia-foundation.org/pages/research_in_2009/148.php] click
here.

Awareness Update

Billy McLaughlin, DMRF Ambassador, continues to raise awareness about
dystonia. He is slated to perform at the Space in Evanston on Saturday,
November 7th. [http://www.evanstonspace.com/] Click here for more
information.

Community Day 2009 - November 14th

Are you looking for ways to save money this holiday season? Consider
purchasing a $5
[http://www.dystonia-foundation.org/filebin/Morepdfs/Community%20Day%2009%20Flyer.pdf]
coupon book that will provide timely, cost saving coupons at Bon Ton Stores
Nationwide. All money raised from the sale of the coupon books will
support the DMRF.

Email Emma at [mailto:epinto@dystonia-foundation.org]
epinto@dystonia-foundation.org to purchase your coupon book today!

Advocacy

The DMRF would like to invite you to attend Dystonia Advocacy Day 2010 on
Tuesday, May 4^th and Wednesday, May 5^th in Washington , DC . Dystonia
Advocacy Day is a popular annual event that brings patients, family
members, and friends from across the country together on Capitol Hill to
advocate on behalf of the dystonia community. Participants have the
opportunity to attend a networking dinner, receive state-of-the-science
updates on dystonia research, engage in comprehensive advocacy training
sessions, and meet with their Members of Congress.

If you would like additional information on Dystonia Advocacy Day 2010 or
if you would like to preliminarily register for the event and receive all
relevant updates and information, please visit the following section of the
DMRF website:
[http://www.dystonia-foundation.org/pages/advocacy_day_2009/476.php]
http://www.dystonia-foundation.org/pages/advocacy_day_2009/476.php.

Upcoming Events

11/11/09 Omaha Awareness Event

11/14/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=48]
Community Day 2009

12/23/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=73] Help
Find A Cure for Dystonia

Happy Thanksgiving

Order the child in your life a 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)

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

DMRF eNews - October 2009

DMRF eNews

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

Monumental Research Grant Awarded to the Dystonia Community

We are pleased to tell you that the National Institutes of Health (NIH)
have announced the funding of a five year, $6 million award aimed at
forming a multicenter Dystonia Coalition to cultivate a better
understanding of the primary focal dystonias and find better therapies,
including Cervical Dystonia, Spasmodic Dysphonia, Blepharospasm, and
others. Leading the Coalition will be H. A. Jinnah, MD, PhD, of Emory
University and his co-director is Joel Perlmutter, MD of Washington
University. The Coalition will bring together the most committed dystonia
researchers in North America and Europe, along with dystonia patient
advocacy groups. The Dystonia Medical Research Foundation (DMRF) is proud
to play an integral role by providing logistical and planning support for
the Coalition. The first meeting of the Coalition is scheduled for November
5th.

For more information, please [http://dmrfinsights.blogspot.com/] click
here.

DMRF receives the Child Neurology Foundation Advocacy Award

The DMRF has been selected as the 2009
[http://childneurologyfoundation.org/main_awards_4.cfm] Child Neurology
Foundation’s Advocacy Award of Merit recipient. We are thrilled to
receive this award from CNF, an organization that is dedicated to
advocating for children and adolescents with neurologic disorders. In
announcing the award, CNF states, “The Dystonia Medical Research
Foundation demonstrated innovativeness and achieved phenomenal impact on
behalf of the greater community. It gladdens us that we can honor the
organization nominated by Dr. Jonathan Mink. DMRF is regarded as one of the
strongest organizations providing advocacy while also engaging the
scientific community to pursue research.”

Awareness Update

Billy McLaughlin, DMRF Ambassador, continues to raise awareness about
dystonia. [http://abclocal.go.com/wls/video?id=7023468] Click here to see
his interview on ABC7.

H1N1 and You

As we enter into flu season and the H1N1 swine flu continues to make
headlines, the DMRF is receiving increasing inquiries about whether it is
safe for individuals who get botulinum toxin injections to get flu
vaccines. The answer is that it is safe to have both kinds of injected
medicines, but some simple precautions should be taken.
To learn more about flu precautions,
[http://www.dystonia-foundation.org/pages/botulinum_toxin___flu_vaccine/555.php]
click here.

Community Day 2009

Are you looking for ways to save money this holiday season? Consider
purchasing a $5
[http://www.dystonia-foundation.org/filebin/Morepdfs/Community%20Day%2009%20Flyer.pdf]
coupon book that will provide timely, cost saving coupons at Bon Ton Stores
Nationwide. All money raised from the sale of the coupon books will
support the DMRF.

Email Emma at [mailto:epinto@dystonia-foundation.org]
epinto@dystonia-foundation.org to purchase your coupon book today!

Dystonia, Stress & the Holidays

Does the holiday season stress you out? Do you want to share how you are
feeling?
[http://www.surveymonkey.com/s.aspx?sm=pJ1aT_2f0gzkRLiZvzjx_2f4JA_3d_3d]
Click here to partipate in the DMRF survey, Dystonia, Stress & the
Holidays.

Upcoming Events

10/11/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=72] NJ Dogs
for Dystonia

10/11/09
[http://www.dystonia-foundation.org/pages/going_the_dystance_for_dystonia/564.php]
Bank of America Chicago Marathon

10/17/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=173]
Dystonia Poker Run

10/25/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=57] Basket
Bash

10/26/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=87]
Dystonia Golf and Tennis Classic

10/29/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=77] NJ
Tricky Tray

11/14/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=48]
Community Day 2009

12/23/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=73] Help
Find A Cure for Dystonia

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

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

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

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

DMRF eNews - June 2009

DMRF eNews

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.

Pre-order your DMRF tshirt today!

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