DMRF eNews - April 2009

DMRF eNews

April 2009

To ensure your receipt of the DMRF eNews, please add
enewsletter@dystonia-foundation.org to your address book.

In the news...

You may have noticed that dystonia has been in the news quite a bit
lately. What a boost for the dystonia community and our awareness building
efforts!

If you missed it, on March 31st, the Oprah Show talked about dystonia. If
you'd like to share your thoughts about what this means to you, please
visit [http://thedmrf.ning.com] http://thedmrf.ning.com.

We are also very excited about a recent radio interview on The Leonard
Lopate Show where guests Jamie Talan and Dr. Rob Weil held a thoughtful
discussion about deep brain stimulation (DBS) surgery.

[http://www.wnyc.org/shows/lopate/episodes/2009/03/31/segments/127494]
Click here to tune in and listen to the show.

Would you like to share your thoughts about what you heard? Visit
[http://thedmrf.ning.com] http://thedmrf.ning.com.

More on DBS

Attend the Deep Brain Stimulation For Dystonia Symposium

Co-sponsored by the
Dystonia Medical Research Foundation

& DBSforDystonia Bulletin Board

This event is a special meeting for adults in any stage of the deep
brain stimulation (DBS) process. The agenda was created for those who are
considering DBS as well as those who have undergone the procedure. Family
and friends are also encouraged to attend.

Topics to be addressed tentatively include:

- Update on Dystonia

- DBS: The Latest Clinical Information

- Who Is A Candidate For DBS?

- Preparing For DBS & Relaxation Techniques

- Programming

- Personal Perspectives

- Insurance & Reimbursement

- Advocacy

Registration includes the Friday evening Meet & Greet Reception, all
Saturday sessions, lunch on Saturday, and meeting materials. Registration
does not include hotel stay.

April 17-18, 2009
Meet & Greet Reception, Friday April 17 - 6:00 PM - 8:00PM
DBS Symposium, Saturday April 18 - 8:30 AM - 5:30 PM

Embassy Suites Nashville at Vanderbilt
1811 Broadway
Nashville,Tennessee 37203
615-320-8899

Registration Options:

-Register online at [http://www.rsvpbook.com/event.php?484522]
http://www.rsvpbook.com/event.php?484522

- Call DMRF at 312.755.0198

That's not all folks!

The Dystonia Medical Research Foundation is pleased to announce the
appointment of Paula Schneider to the position of Leadership Chair, serving
as an ex officio member of the Foundation’s Board of Directors.

Paula is a long-time leader and active member of the DMRF having served as
a founding member of the Media Action Group, the Public Relations Committee,
the DMRF Connecticut State Liaison, a dystonia advocate and a member of the
New York Chapter. She brings great experience and enthusiasm to this
position.

In her role as Leadership Chair, Paula will serve as the liaison between
the Board and the support network and local leaders. Paula will travel to
meet with groups and leaders to provide support to the important work they
are doing and to learn more about what resources are needed to assist local
support efforts.

Congratulations Paula!

Welcome to our 2 newest support groups

We are pleased to announce our two newest groups who are both hosting their
first meetings in April.

Jacksonville Dystonia Support Group

Monday,April 6th


Leader: Sandra Pike

Phone: 904-713-7620

E-mail: [mailto:firefighterpike@yahoo.com] firefighterpike@yahoo.com

Minnesota Dystonia Support Group

Saturday, April 4th

Leaders: Gloria, Dave and Kris Isackson

Phone: 952.949.6153

E-mail: [mailto:gisackson@mchsi.com] gisackson@mchsi.com

DMRF Insights by Janet

We are excited about the launch of our new blog, DMRF Insights by Janet.
This blog, written by Janet Hieshetter,Executive Director of the Dystonia
Medical Research Foundation will offer you an inside look into the workings
of the Foundation. For news, updates, reflections and the like, visit DMRF
Insights by Janet.

To view the blog, please visit [http://dmrfinsights.blogspot.com]
http://dmrfinsights.blogspot.com.

Kept in the loop

Would you like to be kept in the loop in real-time about Foundation news
like that mentioned above? If so, sign up today to receive updates via
text message on your cell phone.

Text DYSTONIA to 90999

Dystonia Medcial Research Foundation Free SMS Service is available on most
carriers. Standard text rates may apply.Reply STOP to stop receiving text messages. For more
information please visit: [http://www.mgive.com/a] www.mgive.com/a

Share your story

The Dystonia Medical Research Foundation extends our heartfelt thanks to
those who recently shared their thoughts and feelings about dystonia in such a public forum. Their courage and candor have done much to raise awareness about
this debilitating disorder.

We know that they are not alone. Many of you have similar stories, similar
experiences and we’d like to hear about them. We encourage you to share
your insight on our discussion board at [http://thedmrf.ning.com/]
http://thedmrf.ning.com.

We would also like to encourage those who are interested in doing something
more to help other affected individuals. If you are interested in learning
more about how to raise awareness, provide support, and advocate for
dystonia within your community,please email us at
[mailto:dystonia@dystonia-foundation.org] dystonia@dystonia-foundation.org
or call our office at 312.755.0198

The race starts here...

The Bank of America Chicago Marathon hosts thousands of runners who choose
to make their Chicago Marathon experience more meaningful by running on
behalf of a charity. These runners begin the training season with goals for
personal bests in their marathon time as well as in fundraising dollars. The
impact from every charity runner is felt around the world.

In 2008, more than 7,300 charity runners collectively raised nearly$10
million for organizations around the globe. The bar is once again set high
for the 2009 Bank of America Chicago Marathon!

If you are interested in participating in the 2009 Bank of America Chicago
Marathon as a charity runner for the DMRF, please send an email to
[mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20about%20the%20marathon]
enewsletter@dystonia-foundation.org today.

For those of you who previously contacted the Foundation about your
interest in the marathon, you will be receiving a packet of information
within the coming weeks. In the interim, if you have any questions, please
feel free to send an email to
[mailto:enewsletter@dystonia-foundation.org?subject=Marathon%20Packets]
enewsletter@dystonia-foundation.org.

The race starts here...the race starts with you...

...and continues on

- Feeling the pinch of the economy, many people are asking themselves how
they might still continue to support the Foundation with limited resources.
One way to leave your lasting legacy is through a planned gift to the
Foundation. Consider making the DMRF a beneficiary of an insurance policy
or in your will. It's a fairly simple process that will allow you to make
a tremendous difference in the lives of affected individuals.

Want more information on how to leave your lasting legacy? Email us at
[mailto:enewsletter@dystonia-foundation.org?subject=Leaving%20a%20lasting%20legacy]
enewsletter@dystonia-foundation.org

A simple act of kindness

Invite your family and friends to join us as we work to make a difference
in the lives of affected individuals. The next time you pull out your cell
phone, think about how the simple act of sending a text can fund a research
project, spur legislation, increase knowledge and connect people to
resources they desperately need.

Text DMRF to 90999 to make a $5 donation.

A one-time charge of $5 will be added to your mobile phone bill.
Standard messaging rates and additional fees may apply. All charges are
billed by and payable to your mobile service provider. Proceeds benefit the
Dystonia Medical Research Foundation. Service is available on most
carriers. You can stop receiving messages and/or recurring charges at any time by texting 'STOP' to 90999.

Turn Over A New Leaf

"Turn Over A New Leaf" and join DMRF for a special fundraising event
hosted by Macy's. It is easy to participate and a great opportunity to
raise much needed funds for the Foundation.

How does it work? Purchase $5 savings passes for
[https://dystonia.securesites.net/dystonia/pages/donate_form/189.php]
Macy's One Good Turn Shopping Event from DMRF and the Foundation keeps 100%
of the proceeds!

Date: Saturday, April 25, 2009

Place: All Macy's locations nationwide

Deadline to Order: April 17, 2009

Use your exclusive savings pass and receive 2 great offers at Macy's:

$5.00 off a one-time $15 purchase

AND

10% - 20% off savings throughout the store

Ready to get your Macy's pass?
[https://dystonia.securesites.net/dystonia/pages/donate_form/189.php] Click
here and select the Macy's One Good Turn Shopping Event in the Special
Event Section of the page.

Precious Gift...

Each one of us can make a very personal contribution and help researchers
discover more clues about this complex disorder we call dystonia by becoming
brain donors. By studying brain tissue from those who have dystonia,family
members who may or may not exhibit symptoms, and others who do not
have dystonia at all, they will have a better understanding of what goes
wrong in the brain that causes the uncontrolled movements to occur. And
more knowledge will lead to new and innovative treatment therapies and that
much closer to finding a cure! Wouldn’t that be wonderful?

To learn more about this invaluable program,please contact Martha Murphy,
Brain Bank Liaison by e-mail at [mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or by calling 800.377.3978 or
312.755.0198. Please make certain to provide your full legal name, your
postal mailing address, a phone number(s) where you can be reached, and your
e-mail address so that we can contact you and mail you information.

Mark Your Calendars

April 16, 2009 - Changing Keys: Billy McLaughlin and the Mysteries of
Dystonia (MN) - Broadcast Minneapolis Public Television - TPT Channel 2

April 20, 2009 - 2nd Annual Curtain Call for a Cause (NJ)

[http://www.rsvpbook.com/event.php?446364]
http://www.rsvpbook.com/event.php?446364

April 24, 2009 - Return to Margaritaville 3 (MA) - Danversport Yacht Club

More information to follow!

April 25, 2009 - Macy's One Good Turn Shopping Event (Nationwide)

May 2, 2009 - Freedom Ride for Dystonia (MD) - Old Glory Harley-Davidson

[http://freedomride4dystonia.wordpress.com]
http://freedomride4dystonia.wordpress.com

May 2, 2009 - Strike Out Dystonia Bowl-A-Thon (NY) -

AMF Wallington Lanes

To register, call Tom Stampe at 201.790.2827

or email [mailto:DMRFnyc@yahoo.com?subject=Bowl-A-Thon] DMRFnyc@yahoo.com

May 5th and 6th - Dystonia Advocacy Day

(see article below)

May 9, 2009 - Fireside Chat Dystonia Meeting (LA) - Ochsner Medical Center

Email Don LeBlanc at
[mailto:airdadone@charter.net?subject=I%27d%20like%20more%20information%20about%20the%20meeting]
airdadone@charter.net for more information.

June 1st through June 7th, 2009 - Dystonia Awareness Week (Nationwide)

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

Dystonia Advocacy Day

- May 5 & 6, 2009

The Dystonia Advocacy Coalition is pleased to announce Dystonia Advocacy
Day in Washington,D.C. on May 5-6, 2009. The goal of our day is to inform
our legislators about dystonia and voice how dystonia has affected our
lives. Issues that will be presented this year include but are not limited
to increased NIH funding for neurological disorders including dystonia and
patient access for effective treatments for dystonia.

The DMRF is recruiting Advocates in the following areas. If you are
interested please e-mail
[mailto:dystonia@dystonia-foundation.org?subject=Advocates]
dystonia@dystonia-foundation.org ASAP with your contact information and
brief background information on yourself and your interest in becoming an
Advocate. We are able to cover transportationand lodging expenses for one
representative from each area.

Senate

Daniel Inouye (D-HI) Appropriations Committee Chairman

Tom Harkin (D-IA) Health Subcommittee of the Appropriations Committee
Chairman

Edward Kennedy(D-MA) Health, Education, Labor, and Pensions
Committee Chairman

Michael Enzi (R-WY) Health, Education, Labor, and Pensions Committee
Ranking Member

House

Jerry Lewis(R-CA-41^st) Appropriations Committee Ranking Member

Todd Tiahrt(R-KS-4^th) Health Subcommittee of the Appropriations
Committee Ranking Member

Henry Waxman(D-CA-30^th) Energy and Commerce Committee Chairman

Nathan Deal(R-GA-9^th) Energy and Commerce Committee Health Subcommittee
Ranking Member

Anna Eshoo(D-CA-14^th)

Advocates who have participated in past events have found them to be an
incredibly rewarding and empowering experience and were proud to have
exercised their right to communicate with their elected officials.

By working together we will strengthen our voice and advance issues of
importance to our dystonia community!

* The DAC is comprised of the following Dystonia advocacy groups: Benign
Essential Blepharospasm Research Foundation (BEBRF), DySTonia, Inc.,
Dystonia Medical Research Foundation(DMRF), National Spasmodic Dysphonia
Association (NSDA), and National Spasmodic Torticollis Association (NSTA).

Stay tuned - the new issue of the Dystonia Dialogue should arrive in your
mailboxes soon!

Are you receiving duplicate mailings? If so, please email Emma at
[mailto:epinto@dystonia-foundation.org?subject=Duplicate%20Mailings]
epinto@dystonia-foundation.org to let us know.


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 receive updates by text message?

Text DYSTONIA to 90999.

Join us on one of our social networks:

[http://www.facebook.com/home.php?]

[http://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