DMRF eNews
December 2010 - to ensure delivery, please add
[12]enewsletter@dystonia-foundation.org to your address book.
The DMRF is proud of the work carried out in 2010. The impact of our programs
is vast, touching the lives of many, making a difference far beyond what the
eye can see. As we look back on the year, it is evident that we are making
progress in the dystonia community.
Science Highlights
The DMRF funded a number of cutting-edge [13]research projects in 2010. In
addition to our grant and fellowship program which supports young
investigators, we contracted with researchers to fund targeted studies on the
development of animal models and testing of compounds that interact with
specific receptors in the brain. This work will expand our knowledge of
dystonia, leading to the development of new therapies.
Through our partnership with the [14]Dystonia Coalition, we supported the
Coalition’s Career Development Award Program, aimed at funding young clinical
investigators to help them establish careers in dystonia research. We also
continue to provide support to the Coalition as an administrative center and
work closely with the Coalition Primary Investigator, Dr. Buz Jinnah.
DMRF also assisted in the organization of the Dystonia Coalition’s Second
Annual Meeting held in Atlanta, GA. There were more than 100 participants
including healthcare professionals, researchers, pharmaceutical company
representatives, and representatives from dystonia patient organizations. The
meeting was a great success with many of the participants providing positive
feedback about the progress made by the Coalition in its first year.
The [15]DMRF is collaborating with Tyler’s Hope for a Dystonia Cure in funding
the second phase of a ground-breaking research project seeking to identify
proteins whose modification effects the genetic mutation that results in
dystonia. The first phase of the project, funded by DMRF in 2009, resulted in
an assay to test for genes and proteins that interact with torsinA. The second
phase of the project will screen the assay developed during Phase 1. The
outcome of this high risk, high return research could lead to targets for new
dystonia drugs.
As a result of outcomes from the Myoclonus Workshop held in late 2009, the DMRF
is supporting a Myoclonus Research Program over the next three years aimed at
supporting clinical research on [16]Myoclonus dystonia.
Advocacy Program
The Dystonia Medical Research Foundation (DMRF), Benign Essential Blepharospasm
Research Foundation (BEBRF), ST/Dystonia, Inc., National Spasmodic Dysphonia
Association (NSDA), and National Spasmodic Torticollis Association (NSTA)
advocate on legislative and regulatory issues of common concern as the
[17]Dystonia Advocacy Network (DAN).
DAN advocates were kept busy in 2010 as a number of issues emerged. The annual
effort to keep dystonia as one of the exclusive “conditions eligible for
study” through the Department of Defense Peer-Reviewed Medical Research Program
received special attention as DAN Advocate Kathy Rentfrow [pictured above,
meets with Senator Daniel Inouye (D-HI)] was called to testify on this issue
before the Senate Defense Appropriations Subcommittee.
DAN advocates also tackled an unexpected issue as access to the new dystonia
treatment Xeomin® was restricted by bureaucratic processes (After receiving FDA
approval, Xeomin® was not scheduled to receive a permanent unique billing code
for reimbursement until 2012, thus making it unlikely that physicians would
begin using the product for over a year). DAN advocates reached out to key
legislators and asked them to encourage the Center for Medicare and Medicaid
Services (CMS) to issue Xeomin® a temporary billing code as early as possible
so that dystonia patients with limited treatment options do not have to wait
for access to all approved therapies. Pictured above is DAN advocate Emma
Mattes with her Congressman, Bill Young (R-FL).
DAN advocates also worked to encourage passage of a key piece of legislation,
the National Neurological Diseases Surveillance Systems Act (H.R. 1362). This
bill would bolster research efforts by establishing a national network for the
collection and storage of data on neurological diseases. The House of
Representatives has passed this bill and if DAN advocates can convince the
Senate to pass the bill as well before Congress adjourns for the year, the H.R.
1362 will be sent to the President for final approval.
If you would like to join the DAN’s nationwide grassroots network by becoming a
dystonia advocate, please contact the DMRF’s Grassroots Coordinator, Dane
Christiansen, at [18]dchristiansen@dystonia-foundation.org
Awareness & Education
The DMRF was pleased to provide the dystonia community with the following
awareness activities and programs in 2010.
Awareness
The DMRF launched an online campaign to commemorate Dystonia Awareness Week,
June 6-12, 2010. Faces of Dystonia was a series of profiles about members of
the dystonia community. One profile was distributed on each day of Awareness
Week. The individuals represented diverse forms of dystonia, roles with the
DMRF, ages, and geography. Each story both highlighted the individual’s unique
story and reflected a DMRF program or activity.
Support
DMRF Support Groups empower patients, family members, and friends with
information and offer a venue for discussing and allowing their changing needs
to be heard. Support groups provide members the opportunity to be and stay
connected with others who can truly empathize with how dystonia changes lives.
To find a dystonia support group in your area, [19]click here.
Symposia
Deep Brain Stimulation Symposium & Dystonia Forum:The DMRF partnered with
University of California, San Francisco (UCSF) Movement Disorders Program and
the DBSforDystonia online bulletin board to host a special ‘double-decker’
event in May that included a track specifically on deep brain stimulation for
dystonia and sessions providing an overview of dystonia. Medical speakers
included experts from UCSF and Stanford University.
Western Regional Dystonia Symposium:The [20]Western Regional Dystonia Symposium
in Pasadena, California held in October featured DMRF Awareness Ambassador and
dystonia-affected guitarist Billy McLaughlin, who performed at the Friday
evening welcome dinner and reception. The stellar line-up of speakers included
professionals from throughout southern California and beyond.
Mid-Atlantic Regional Dystonia Conference: The Greater Washington, DC Dystonia
Support Group hosted an educational meeting in November. Experts presented on
the latest in dystonia research and treatments such as acupuncture and Chinese
medicine, traditional treatments and surgical options like Deep Brain
Stimulation. Breakout sessions were available for specific topics concerning
dystonia patients.
Webinars
Dystonia & Siblings focused on helping the siblings of those children affected
by dystonia. Moderated by Kathy Rentfrow, a mother of two and a foster parent,
has a teen-aged daughter who was diagnosed with dystonia. Kathy has been a
featured speaker at DMRF Children & Family Symposiam, has a masters degree in
education ans has been a long time advocate for dystonia.
[21]Dystonia International Patient Registry (DIPR), founded by Tyler's Hope for
A Dystonia Cure and supported by the Dystonia Medical Research Foundation
(DMRF). In this webinar, moderated by the DIPR's Medical Advisor Dr. Michael
Okun, discussed patient registries and why they are so important.
[22]Dystonia & Managing Holiday Stress, while full of excitement, this can also
be a time of increased stress which can worsen dystonia symptoms. Moderated by
Dr. Bryan Bernard, Neuropsychologist at Rush University Medical Center,
discussed techniques and learning ways of coping with stress.
Stay tuned...
Research Update moderated by Science Office Jan Teller, MA, PhD. Call and log
in to hear the latest news on DMRF science activities. Advance registration
encouraged.
For more information and to register, [23]
[24]click here.
Dystonia Programs
The Foundation launched two new fundraising programs, Dogs4Dystonia and
Dystance4Dystonia. A number of these events were held in communities across
the country to raise awareness and much needed funds to support our quest for a
cure.
Dogs4Dystonia are dog walks for everyone, whether you are a dog owner, a dog
lover, or someone who just wants to do something to support the work of the
DMRF in the dystonia community.
Thank you to Carmelita de la Guardia, Antonella Gosselin, Hunter Webster, Len
and Janice Nachbar, Joanna Manusov, and Maria and Amy Yurchision who hosted
walks this year.
Many took part in the Dystance4Dystonia
program participated in marathons, 10K, 8K, and 5K runs and walks across the
country.
Thank you to Jim and Dianne Loy, Kathleen Whitman,
William Williams, Team Libby, Dena Sherry, Edie DeLorme, Judy Watson, Julie
Zaia, Kara Wilke, Aaron and Jessica Meyer, Meredith Fain, Jen Cannon, Jennifer
Molski, Scott and Katie Biedess, Tiffany Wonser, Stephanie Wilson, Russ Johnson
and Helen Capparell for going the dystance.
Both programs offer family, friends, neighbors and colleagues the opportunity
to show their support for the dystonia community while helping to raise much
needed funds for our programming.
To learn more about how you can bring an event to your community, email Tammy
at [25]treed@dystonia-foundation.org
Upcoming Events
[26]
12/11/10 [27]Central Jersey Dystonia Support & Action Group
12/18/10 [28]Arkansas Dystonia SG Meeting
12/13/10 [29]Minneapolis, MN SG Meeting
01/26/11 [30]Research Update Webinar
02/05/11 [31]Rhode Island Dystonia & Neurological Movement
[32]disorder SG Meeting
[33]
[34]
For information about these or other events, please email us at
[35]enewsletter@dystonia-foundation.org.
References
1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
10. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
11. http://www.dystonia-foundation.org/
12. mailto:enewsletter@dystonia-foundation.org
13. http://www.dystonia-foundation.org/pages/research_in_2010/148.php
14. http://www.dystonia-foundation.org/pages/dystonia_coalition_/603.php
15. http://www.dystonia-foundation.org/pages/articles/221.php?id=13
16. http://www.dystonia-foundation.org/pages/myoclonic_dystonia/65.php
17. http://www.dystonia-advocacy.org/
18. mailto:dchristiansen@dystonia-foundation.org?subject=Advocacy
19. http://www.dystonia-foundation.org/pages/support_groups/107.php
20. http://www.dystonia-foundation.org/pages/articles_from_the_dystonia_dialogue/221.php?id=19
21. http://www.dystonia-foundation.org/pages/dystonia_international_patient_registry_webinar/608.php
22. http://www.dystonia-foundation.org/pages/dystonia___holiday_stress_webinar/607.php
23. https://www2.gotomeeting.com/register/599425898
24. https://www2.gotomeeting.com/register/599425898
25. mailto:treed@dystonia-foundation.org
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=133&Itemid=89&year=2010&month=12&day=11&title=central-jersey-dystonia-support-a-action-group&uid=07998a770716ba49695f6d5ddfb540a0
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=145&Itemid=89&year=2010&month=12&day=18&title=arkansas-dystonia-sg-meeting&uid=059982f7ae3399ace954d0a30945d441
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=148&Itemid=89&year=2010&month=12&day=13&title=minneapolis-mn-sg-meeting&uid=a8611e0d0c199a4f4f2b704a58d400d0
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=142&Itemid=89&year=2011&month=01&day=26&title=research-update-webinar&uid=78253f152274b15e93d87ff4d731a195
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=149&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=1f8ee053dfc624cfca198e18bc9802af
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=149&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=1f8ee053dfc624cfca198e18bc9802af
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
35. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events
IN THIS ISSUE:
Science Highlights
Advocacy Program
Awareness & Education
Dystonia Programs
Upcoming Events
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[10]enewsletter@dystonia-foundation.org
[11]www.dystonia-foundation.org
© 2010 DMRF
Monday, June 6, 2011
Tuesday, November 9, 2010
DMRF eNews - November 2010
DMRF eNews
November 2010 - to ensure delivery, please add
[12]enewsletter@dystonia-foundation.org to your address book.
Dystonia & Managing Holiday Stress
The holiday season is a time of parties, shopping, decorating, and time spent
with family and friends. While full of excitement, this can also be a time of
increased stress which may exacerbate or worsen dystonia symptoms. Please join
us on Wednesday, November 3 at 6:00pm central time for a webinar on Holiday
Stress. In this webinar, moderated by Dr. Bryan Bernard, Neuropsychologist at
Rush University Medical Center, you will learn more about coping with stress
and techniques to manage it.
To register for the webinar, please click [13]here.
Mid-Atlantic Regional Dystonia Conference
The Greater Washington DC Dystonia Support Group invites you to attend the
Mid-Atlantic Regional Conference on November 14, 9:00am-5:00pm.
Holy Cross Hospital
1500 forest Glen Road
Silver Spring, MD
Join us for a special one day conference where some of the top experts in the
field will present the latest dystonia research, treatments and much more. We
are pleased to
offer you this conference at no charge with lunch included.
Pre-registration is required!
Registration Deadline: November 7, 2010
For more information or to register please contact Elena at
[14]dystonia10@md.net or 703.521.7918.
The Power of Your Story
Using Your Experience to Promote Dystonia Awareness
Each of us who have been touched by dystonia has a story. Each of these stories
is an important and powerful tool to educate the public about dystonia.
These are just a few examples of how you can share your story to improve
dystonia awareness:
* Share your experiences on any of the DMRF's many online social media
websites (Facebook, MySpace, Ning, YouTube, and the Online Dystonia Bulletin
Board). You'll receive support if you are struggling and provide comfort to
others who may be going through a difficult period.
* Contact a local newspaper, radio, or television outlet and tell them you
have a terrific idea for a story: Dystonia and how it affects your life. Don't
give up if you don't succeed right away.
* Offer to speak to youth or community groups about dystonia and your
dystonia journey. Many clubs are eager for guest speakers and new topics.
* Consider sharing your story to help greater awareness to dystonia and the
need for a cure.
DMRF member Janice Nachbar educates Continental Airlines employees. She
wrote to Continental Airlines about her daughter Joanna Manusov's (left, with
rightfielder Nick Swisher) experiences traveling with dystonia, and the letter
was published in Continental's employee newsletter. The article will reach
45,000 Continental employees.
Click here to read the article [15]"My Daughter Joanna".
DMRF member Jason Dunn (left) appeared in a television program called
Extraordinary Humans: Muscles on the National Geographic channel which
premiered this past June during Dystonia Awareness Week 2010. Jason shared how
generalized dystonia affects his daily life.
Twelve-year-old Aidan Grasmich of Palmer, Alaska shared his story with the
Frontiersman newspaper earlier this year. Aidan (left) is pictured with parents
Sharry and Chad Grasmick, Sisters Jade and Mai, and family friend and longtime
DMRF volunteer Dee Linde during a meeting in Portland, Oregon.
DMRF member Pat Brogan (left) and his service dog Hutch made a presentation
about dystonia to a 12th grade anatomy and physiology class at Muhlenberg High
School in Laureldale, Pennsylvannia. Pat and Hutch are pictured with teacher
Rich Kolka and guidance counselor Tim Potopa.
DMRF support groups promote dystonia awareness year round thorough grassroots
events and activities.
Dystonia Awareness Week is June 5-11, 2011
It's not too early to make plans to promote dystonia awareness in 2011 and
participate in Dystonia Awareness Week along with DMRF volunteers throughout
the country.
For more information about how you can help promote awareness, contact, your
local support group or the DMRF at 800-377-3978 or
dystonia@dystonia-foundation.org.
Upcoming Events
[16]
11/07/10 [17]ING New York City Marathon
11/08/10 [18]Dine for Dystonia (Freehold, NJ)
11/13/10 [19]Dystance4Dystonia Walk (Santa Clarita, CA)
[20]Carson's Community Day (Nationwide)
[21]North Bay CA SG Meeting
[22]New Mexico Dystonia SG Meeting
[23]Fairfield, CA Dystonia/ST SG Meeting
[24]San Diego County SG Meeting
11/14/10 [25]Mid-Atlantic Regional Conference
11/15/10 [26]Palm Springs California SG Meeting
11/21/10 [27]Philadelphia, PA Marathon
11/28/10 [28] Help Find a Cure for Dystonia (West Hazleton, PA)
12/04/10 [29]Southeast PA DMRF SG Meeting
12/11/10 [30]Central Jersey Dystonia Support & Action Group
[31]
[32]
For information about these or other events, please email us at
[33]enewsletter@dystonia-foundation.org.
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[10]enewsletter@dystonia-foundation.org
[11]www.dystonia-foundation.org
© 2010 DMRF
November 2010 - to ensure delivery, please add
[12]enewsletter@dystonia-foundation.org to your address book.
Dystonia & Managing Holiday Stress
The holiday season is a time of parties, shopping, decorating, and time spent
with family and friends. While full of excitement, this can also be a time of
increased stress which may exacerbate or worsen dystonia symptoms. Please join
us on Wednesday, November 3 at 6:00pm central time for a webinar on Holiday
Stress. In this webinar, moderated by Dr. Bryan Bernard, Neuropsychologist at
Rush University Medical Center, you will learn more about coping with stress
and techniques to manage it.
To register for the webinar, please click [13]here.
Mid-Atlantic Regional Dystonia Conference
The Greater Washington DC Dystonia Support Group invites you to attend the
Mid-Atlantic Regional Conference on November 14, 9:00am-5:00pm.
Holy Cross Hospital
1500 forest Glen Road
Silver Spring, MD
Join us for a special one day conference where some of the top experts in the
field will present the latest dystonia research, treatments and much more. We
are pleased to
offer you this conference at no charge with lunch included.
Pre-registration is required!
Registration Deadline: November 7, 2010
For more information or to register please contact Elena at
[14]dystonia10@md.net or 703.521.7918.
The Power of Your Story
Using Your Experience to Promote Dystonia Awareness
Each of us who have been touched by dystonia has a story. Each of these stories
is an important and powerful tool to educate the public about dystonia.
These are just a few examples of how you can share your story to improve
dystonia awareness:
* Share your experiences on any of the DMRF's many online social media
websites (Facebook, MySpace, Ning, YouTube, and the Online Dystonia Bulletin
Board). You'll receive support if you are struggling and provide comfort to
others who may be going through a difficult period.
* Contact a local newspaper, radio, or television outlet and tell them you
have a terrific idea for a story: Dystonia and how it affects your life. Don't
give up if you don't succeed right away.
* Offer to speak to youth or community groups about dystonia and your
dystonia journey. Many clubs are eager for guest speakers and new topics.
* Consider sharing your story to help greater awareness to dystonia and the
need for a cure.
DMRF member Janice Nachbar educates Continental Airlines employees. She
wrote to Continental Airlines about her daughter Joanna Manusov's (left, with
rightfielder Nick Swisher) experiences traveling with dystonia, and the letter
was published in Continental's employee newsletter. The article will reach
45,000 Continental employees.
Click here to read the article [15]"My Daughter Joanna".
DMRF member Jason Dunn (left) appeared in a television program called
Extraordinary Humans: Muscles on the National Geographic channel which
premiered this past June during Dystonia Awareness Week 2010. Jason shared how
generalized dystonia affects his daily life.
Twelve-year-old Aidan Grasmich of Palmer, Alaska shared his story with the
Frontiersman newspaper earlier this year. Aidan (left) is pictured with parents
Sharry and Chad Grasmick, Sisters Jade and Mai, and family friend and longtime
DMRF volunteer Dee Linde during a meeting in Portland, Oregon.
DMRF member Pat Brogan (left) and his service dog Hutch made a presentation
about dystonia to a 12th grade anatomy and physiology class at Muhlenberg High
School in Laureldale, Pennsylvannia. Pat and Hutch are pictured with teacher
Rich Kolka and guidance counselor Tim Potopa.
DMRF support groups promote dystonia awareness year round thorough grassroots
events and activities.
Dystonia Awareness Week is June 5-11, 2011
It's not too early to make plans to promote dystonia awareness in 2011 and
participate in Dystonia Awareness Week along with DMRF volunteers throughout
the country.
For more information about how you can help promote awareness, contact, your
local support group or the DMRF at 800-377-3978 or
dystonia@dystonia-foundation.org.
Upcoming Events
[16]
11/07/10 [17]ING New York City Marathon
11/08/10 [18]Dine for Dystonia (Freehold, NJ)
11/13/10 [19]Dystance4Dystonia Walk (Santa Clarita, CA)
[20]Carson's Community Day (Nationwide)
[21]North Bay CA SG Meeting
[22]New Mexico Dystonia SG Meeting
[23]Fairfield, CA Dystonia/ST SG Meeting
[24]San Diego County SG Meeting
11/14/10 [25]Mid-Atlantic Regional Conference
11/15/10 [26]Palm Springs California SG Meeting
11/21/10 [27]Philadelphia, PA Marathon
11/28/10 [28] Help Find a Cure for Dystonia (West Hazleton, PA)
12/04/10 [29]Southeast PA DMRF SG Meeting
12/11/10 [30]Central Jersey Dystonia Support & Action Group
[31]
[32]
For information about these or other events, please email us at
[33]enewsletter@dystonia-foundation.org.
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[10]enewsletter@dystonia-foundation.org
[11]www.dystonia-foundation.org
© 2010 DMRF
DMRF eNews - October 2010
DMRF eNews
October 2010 - to ensure delivery, please add
[12]enewsletter@dystonia-foundation.org to your address book.
Dystonia International Patient Registry- Register Soon!
Please join us on Tuesday, October 5th, at 6pm central time for an informative
webinar to discuss the Dystonia International Patient Registry (DIPR), founded
by Tyler's Hope for A Dystonia Cure and supported by the Dystonia Medical
Research Foundation.
The goal of this registry is to develop a comprehensive list of all individuals
who carry any of the dystonia gene deletions, specifically the DYT1 gene
deletion and their family members worldwide. It is the first and only dystonia
registry to attempt to capture this information to assist researchers in
finding a cure to dystonia.
In this webinar, moderated by the DIPR's Medical Advisor Dr. Michael Okun, you
will learn more about patient registries and why they are important, along with
more specific information about the DIPR.
To register for the webinar, please click [13]here.
Dystonia Coalition News
DMRF is pleased to announce the funding of two new Career Development Awards in
partnership with the Dystonia Coalition. Career Development Awards are awarded
to young clinical investigators to help them establish careers in dystonia
research.
To learn more about these awards, please click [14]here.
To learn more about the Dystonia Coalition, click [15]here.
You can [16]help make a difference in dystonia research!
Participating in Clinical Trials
Have you ever thought about participating in a clinical trial? Patients play an
invaluable role to researchers carrying out these studies-without you it would
not be possible!
To learn more about clinical trials and how to find trials that may be
recruiting, please click [17]here.
Dystonia & Managing Holiday Stress
The holiday season is a time of parties, shopping, decorating, and time spent
with family and friends. While full of excitement, this can also be a time of
increased stress which may exacerbate or worsen dystonia symptoms. Please join
us on Wednesday, November 3 at 6:00pm central time for a webinar on Holiday
Stress. In this webinar, moderated by Dr. Bryan Bernard, Neuropsychologist at
Rush University Medical Center, you will learn more about coping with stress
and techniques to manage it.
To register for the webinar, please click [18]here.
Available Now!
Twisted - Award-winning documentary by Laurel Chiten featuring several DMRF
members, provides an inside glimpse into what it means to live with dystonia.
Proceeds from your purchase will support the DMRF research programs.
These newly available copies of Twisted were made possible by a generous gift
from Ira Tritt in memory of his beloved wife, Shari Farber-Tritt.
Get your copy of Twisted today, please click [19]here.
Carson Pirie Scott Community Day - DMRF is partnering with the Bon-Ton family
of stores (Bon-Ton, Bergner's, Boston Store, Parisian, Elder-Beerman,
Herberger's, Younkers) through the sale of coupon booklets, good toward store
merchandise. With 100% of our booklet sales benefiting dystonia. Each coupon
booklet is on sale for $5.
If you would like to make a purchase, please click [20]here.
Look for the coupon booklet under Special Event.
Upcoming Events
[21]
10/09/10 [22]Alabama Dystance4Dystonia Run
[23]Central Virginia Dysphonia-Dystonia SG Meeting
10/10/10 [24]Bank of America Chicago Marathon (Chicago, IL)
10/14/10 [25]Central Iowa Dystonia SG Meeting
10/16/10 [26]Baltimore/John Hopkins SG Meeting
[27]PA Dogs4Dystonia (Kingston, PA)
10/17/10 [28]Portland, OR & SW Washington SG Meeting
10/24/10 [29]6th Annual Basket Bash (Chicago, IL)
10/28/10 [30] Annual NJ Tricky Tray (Woodland Park, NJ)
10/30/10 [31]Tulsa Fun Run (Tulsa, OK)
11/13/10 [32]Dystance4Dystonia Walk (Santa Clarita, CA)
[33]Carson's Community Day (Nationwide)
[34]North Bay CA SG Meeting
[35]New Mexico Dystonia SG Meeting
[36]Fairfield, CA Dystonia/ST SG Meeting
11/14/10 [37]Mid-Atlantic Regional Conference
11/15/10 [38]Palm Springs California SG Meeting
11/28/10 [39] Help Find a Cure for Dystonia (West Hazleton, PA)
12/04/10 [40]Southeast PA DMRF SG Meeting
[41]
[42]
For information about these or other events, please email us at
[43]enewsletter@dystonia-foundation.org.
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[10]enewsletter@dystonia-foundation.org
[11]www.dystonia-foundation.org
© 2010 DMRF
October 2010 - to ensure delivery, please add
[12]enewsletter@dystonia-foundation.org to your address book.
Dystonia International Patient Registry- Register Soon!
Please join us on Tuesday, October 5th, at 6pm central time for an informative
webinar to discuss the Dystonia International Patient Registry (DIPR), founded
by Tyler's Hope for A Dystonia Cure and supported by the Dystonia Medical
Research Foundation.
The goal of this registry is to develop a comprehensive list of all individuals
who carry any of the dystonia gene deletions, specifically the DYT1 gene
deletion and their family members worldwide. It is the first and only dystonia
registry to attempt to capture this information to assist researchers in
finding a cure to dystonia.
In this webinar, moderated by the DIPR's Medical Advisor Dr. Michael Okun, you
will learn more about patient registries and why they are important, along with
more specific information about the DIPR.
To register for the webinar, please click [13]here.
Dystonia Coalition News
DMRF is pleased to announce the funding of two new Career Development Awards in
partnership with the Dystonia Coalition. Career Development Awards are awarded
to young clinical investigators to help them establish careers in dystonia
research.
To learn more about these awards, please click [14]here.
To learn more about the Dystonia Coalition, click [15]here.
You can [16]help make a difference in dystonia research!
Participating in Clinical Trials
Have you ever thought about participating in a clinical trial? Patients play an
invaluable role to researchers carrying out these studies-without you it would
not be possible!
To learn more about clinical trials and how to find trials that may be
recruiting, please click [17]here.
Dystonia & Managing Holiday Stress
The holiday season is a time of parties, shopping, decorating, and time spent
with family and friends. While full of excitement, this can also be a time of
increased stress which may exacerbate or worsen dystonia symptoms. Please join
us on Wednesday, November 3 at 6:00pm central time for a webinar on Holiday
Stress. In this webinar, moderated by Dr. Bryan Bernard, Neuropsychologist at
Rush University Medical Center, you will learn more about coping with stress
and techniques to manage it.
To register for the webinar, please click [18]here.
Available Now!
Twisted - Award-winning documentary by Laurel Chiten featuring several DMRF
members, provides an inside glimpse into what it means to live with dystonia.
Proceeds from your purchase will support the DMRF research programs.
These newly available copies of Twisted were made possible by a generous gift
from Ira Tritt in memory of his beloved wife, Shari Farber-Tritt.
Get your copy of Twisted today, please click [19]here.
Carson Pirie Scott Community Day - DMRF is partnering with the Bon-Ton family
of stores (Bon-Ton, Bergner's, Boston Store, Parisian, Elder-Beerman,
Herberger's, Younkers) through the sale of coupon booklets, good toward store
merchandise. With 100% of our booklet sales benefiting dystonia. Each coupon
booklet is on sale for $5.
If you would like to make a purchase, please click [20]here.
Look for the coupon booklet under Special Event.
Upcoming Events
[21]
10/09/10 [22]Alabama Dystance4Dystonia Run
[23]Central Virginia Dysphonia-Dystonia SG Meeting
10/10/10 [24]Bank of America Chicago Marathon (Chicago, IL)
10/14/10 [25]Central Iowa Dystonia SG Meeting
10/16/10 [26]Baltimore/John Hopkins SG Meeting
[27]PA Dogs4Dystonia (Kingston, PA)
10/17/10 [28]Portland, OR & SW Washington SG Meeting
10/24/10 [29]6th Annual Basket Bash (Chicago, IL)
10/28/10 [30] Annual NJ Tricky Tray (Woodland Park, NJ)
10/30/10 [31]Tulsa Fun Run (Tulsa, OK)
11/13/10 [32]Dystance4Dystonia Walk (Santa Clarita, CA)
[33]Carson's Community Day (Nationwide)
[34]North Bay CA SG Meeting
[35]New Mexico Dystonia SG Meeting
[36]Fairfield, CA Dystonia/ST SG Meeting
11/14/10 [37]Mid-Atlantic Regional Conference
11/15/10 [38]Palm Springs California SG Meeting
11/28/10 [39] Help Find a Cure for Dystonia (West Hazleton, PA)
12/04/10 [40]Southeast PA DMRF SG Meeting
[41]
[42]
For information about these or other events, please email us at
[43]enewsletter@dystonia-foundation.org.
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[10]enewsletter@dystonia-foundation.org
[11]www.dystonia-foundation.org
© 2010 DMRF
DMRF eNews - September 2010
DMRF eNews
September 2010 - to ensure delivery, please add
[13]enewsletter@dystonia-foundation.org to your address book.
September is a month when we all focus on education. With back to school
activities for many, education is never far from our minds. It is no different
at the DMRF, for we understand that staying on top of dystonia news and
information is very important. In addition to our website and our educational
materials, the DMRF hosts a number of events for our members.
Attend the Western Regional Dystonia Symposium
Join us for the Western Regional Symposium on October 2nd. This great event
will allow members of the dystonia community the opportunity to learn more
about the disorder, network, and share their experiences.
Hilton Pasadena
168 S. Los Robles Avenue
Pasadena, CA 91101
Reception and Dinner
There will be a special reception and welcome dinner at 6:30 p.m. on Friday,
October 1st, at the Hilton Pasadina Hotel. We are extremely fortunate to have
guitarist/musician and DMRF Awareness Ambassador BILLY McLAUGHLIN in
attendance. Not only will he share his story of living with dystonia, he will
also be performing!The cost to attend the reception and the dinner is $20.
Conference
The conference sessions will start on Saturday, October 2nd, this includes a
continental breakfast, lunch and all materials. The registration fee for the
sessions is $25 and is separate from the dinner and concert.
Advanced registration is required and you are responsible for making your own
hotel reservations.
For more detailed information, please [14]click here.
To register, call: 800-377-DYST (3978) or [15]click here.
Mid-Atlantic Regional Dystonia Conference
The Greater Washington DC Dystonia Support Group invites you to attend the
Mid-Atlantic Regional Conference on November 14, 9:00am-5:00pm.
Holy Cross Hospital
1500 Forest Glen Road
Silver Spring, MD
Join us for a special one day conference where some of the top experts in the
field will present the latest dystonia research, treatments and much more. We
are pleased to offer you this conference at no charge with lunch included.
Pre-registration is required!
For more information or to register please contact Elena at
[16]dystonia10@md.net or 703.521.7918.
Registration Deadline: November 7, 2010
Make A Difference in Dystonia Research
You can make a difference!
Please join us on Tuesday, October 5th, at 6pm central time for an informative
webinar to discuss the Dystonia International Patient Registry (DIPR), founded
by Tyler's Hope for A Dystonia Cure and supported by the Dystonia Medical
Research Foundation.
The goal of this registry is to develop a comprehensive list of all individuals
who carry any of the dystonia gene deletions, specifically the DYT1 gene
deletion and their family members worldwide. It is the first and only dystonia
registry to attempt to capture this information to assist researchers in
finding a cure to dystonia.
In this webinar, moderated by the DIPR's Medical Advisor Dr. Michael Okun, you
will learn more about patient registries and whey they are important, along
with more specific information about the DIPR registry and how you can help
make a difference in dystonia research.
To register for the webinar, please click on this link:
[17]https://www2.gotomeeting.com/register/131489003.
If you have questions about the webinar, please contact Jody Roosevelt at
[18]jroosevelt@dystonia-foundation.org.
DMRF Dogs4Dystonia Virtual Dog Walk
Join the DMRF for the 1st Annual DMRF Dogs4Dystonia Virtual Dog Walk.
Everyone who walks their dog can participate and raise much needed funds for
dystonia research!
How does it work? We are asking our dystonia family to walk their dogs during
the month of September and raise a minimum of $75 per dog in support of the
DMRF. Ask your family and friends to show their support by making a donation in
honor of your four legged friend.
All virtual Dogs4Dystonia participants will receive a "Thank You" package that
includes a Dogs4Dystonia bandana and ID tag for your dog.
The Virtual Walk is open for the entire month of September- any time, day or
night - you and your dog have the flexibility to walk when you want.The
Dogs4Dystonia Virtual Dog Walk is a great way to not only spend quality time
with your canine companion, it is also a great way to support a phenomenal
cause. Sign up to participate today!
To participate in the Dogs4Dystonia Virtual Dog Walk [19]click here.
Workplace Campaigns
The DMRF participates in the world's largest and most successful workplace
charity program, the Combined Federal Campaign (CFC). Through the CFC campaign,
government employees are able to make regular donations in support of the DMRF
through payroll deductions.
If you are a federal government or military employee and would like to support
the work of the DMRF, please take part in the Combined Federal Campaign by
entering the Foundations name and/or code #10592 on your pledge card.
Don't know if your agency is taking part in the CFC Program? Contact your Human
Resources Department to find out more.
Survey
Share Your Thoughts!
How was your last doctor’s visit? Are you looking for a way to share how your
visit went? Share your thoughts today.
Complete a short survey on dystonia, doctors, & care.
Click here: [20]https://www.surveymonkey.com/s/dystoniacare
Upcoming Events
09/01/10 [21]1st Annual DMRF Dogs4Dystonia Virtual Dog Walk
09/11/10 [22]Colorado-Denver SG Meeting
[23]New Mexico Dystonia SG Meeting
[24]Greater Dallas Dystonia/Dysphonia SG Meeting
09/12/10 [25]Central Connecticut Dystonia SG Meeting
09/19/10 [26]Greater Washington, DC SG Meeting
[27]RNR Philadelphia 1/2 Marathon
09/25/10 [28]San Diego County SG Meeting[29]
[30]Southeast, PA SG Meeting
09/26/10 [31]NJ Dogs4Dystonia Dog Walk (Freehold, NJ)
09/27/10 [32]RI Dystonia & Neurological Mov. Dis. SG Meeting
10/01/10 [33]Western Regional Symposium
10/02/10 [34]Quad-City Dystonia SG Meeting
10/03/10 [35]St. Louis Walkathon (St. Louis, MO)
[36]Medtronics Twin Cities Marathon (Minneapolis, MN)
10/04/10 [37]DC Golf and Tennis Classic
10/09/10 [38]Alabama Dystance4Dystonia Run
10/10/10 [39]Bank of America Chicago Marathon (Chicago, IL)
10/16/10 [40]Baltimore/John Hopkins SG Meeting
[41]PA Dogs4Dystonia (Kingston, PA)
10/24/10 [42]6th Annual Basket Bash (Chicago, IL)
10/28/10 [43]Annual NJ Tricky Tray (West Paterson, NJ)
10/30/10 [44]Tulsa Fun Run (Tulsa, OK)
11/13/10 [45]Dystance4Dystonia Walk (Santa Clarita, CA)
[46]North Bay CA SG Meeting
[47]New Mexico Dystonia SG Meeting
[48]Fairfield, CA Dystonia/ST SG Meeting
For information about these or other events, please
[49]enewsletter@dystonia-foundation.org.
References
1. http://www.dystonia-foundation.org/pages/merchandise/277.php
2. http://www.dystonia-foundation.org/pages/merchandise/277.php
3. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
4. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
5. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
6. http://dmrfenews.blogspot.com/
7. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
8. http://www.myspace.com/thedmrf
9. http://thedmrf.ning.com/
10. http://twitter.com/dmrf
11. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
12. http://www.dystonia-foundation.org/
13. mailto:enewsletter@dystonia-foundation.org
14. http://www.dystonia-foundation.org/pages/attend_the_western_regional_dystonia_symposium/571.php
15. http://www.dmrfevents.org/event.php?458954
16. mailto:dystonia10@md.net?subject=Mid-Atlantic%20Regional%20Conference
17. https://www2.gotomeeting.com/register/131489003
18. mailto:jroosevelt@dystonia-foundation.org?subject=DiPR%20info
19. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=77&Itemid=91
20. https://www.surveymonkey.com/s/dystoniacare
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=118&Itemid=89&year=2010&month=09&day=01&title=1st-annual-dmrf-dogs4dystonia-virtual-dog-walk&uid=7956e7bf99193997869465bfc7c7efb1
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=112&Itemid=89&year=2010&month=09&day=11&title=colorado-denver-sg-meeting&uid=6f58aff8f38eacb717ce522fbcffad2f
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=92&Itemid=89&year=2010&month=09&day=11&title=new-mexcio-dystonia-sg-meeting&uid=1dc93a986f03dd52178226e9ef01c8b3
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=116&Itemid=89&year=2010&month=09&day=11&title=greater-dallas-dystoniadysphonia-sg-meeting&uid=5a51751e9ccf9036816afa38985ac4f2
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=102&Itemid=89&year=2010&month=09&day=19&title=greater-washington-dc-dystonia-sg-meeting&uid=29371a002768eeff2e0c0cb5f001d311
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=117&Itemid=89&year=2010&month=09&day=25&title=san-diego-county-sg-meeting&uid=983b4a2df7ce0dfb528b842362db3dce
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=33&Itemid=89&year=2010&month=09&day=26&title=nj-dogs4dystonia-dog-walk&uid=668c6f6f98953f1092b05b40c2aa5728
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=113&Itemid=89&year=2010&month=09&day=27&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=6f40479909fa8d1356806d3e6f3df8d7
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=49&Itemid=89&year=2010&month=10&day=02&title=western-regional-symposium&uid=fb7ad822c07989ba1eff5450c196c422
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=110&Itemid=89&year=2010&month=10&day=02&title=quad-city-dystonia-sg-meeting&uid=bf7ac67bae5aacdda0be3213de5aec35
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=105&Itemid=89&year=2010&month=10&day=03&title=qmoving-forwardq-4th-annual-st-louis-dystonia-walk-a-thon&uid=30eebe76b967f20d87af2e9c7f46a6a9
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=96&Itemid=89&year=2010&month=10&day=03&title=medtronic-twin-cities-marathon&uid=379e1720caadc454d64d3c74ab90f3b1
37. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=107&Itemid=89&year=2010&month=10&day=04&title=dc-golf-and-tennis-classic&uid=84485cff044bd9977b0fc837a73114d0
38. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=103&Itemid=89&year=2010&month=10&day=09&title=alabama-dystance4dystonia-run&uid=870818d71aa02e48c4b5a91951829781
39. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=17&Itemid=89&year=2010&month=10&day=10&title=bank-of-america-chicago-marathon&uid=6ad1bf8969853341e2829586401ab13e
40. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=53&Itemid=89&year=2010&month=10&day=16&title=baltimorejohns-hopkins-support-group-meeting&uid=290d972c71314b4349d53fb5199f4f1b
41. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=104&Itemid=89&year=2010&month=10&day=16&title=pa-dogs4dystonia-walk-a-thon-kingston-pa&uid=99e167b0db48b840f1dc1197c772aec5
42. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=106&Itemid=89&year=2010&month=10&day=24&title=6th-annual-basket-bash&uid=4d6937907ed85f8ad771bd7da4c7af93
43. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=34&Itemid=89&year=2010&month=10&day=28&title=annual-new-jersey-tricky-tray&uid=a3ad21371ae59c55ecf0fcac8b64d758
44. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=82&Itemid=89&year=2010&month=10&day=30&title=tulsa-run&uid=51b4314392afb292ad1aad23de6f3b7a
45. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=115&Itemid=89&year=2010&month=11&day=13&title=santa-clarita-ca-dystance4dystonia-run&uid=e45d9f6bca62c8ad93e84c95d98dcea5
46. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=62&Itemid=89&year=2010&month=11&day=13&title=north-bay-ca-support-group-meeting&uid=8819bc40aa45873fad1b41cafe9db6bf
47. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=93&Itemid=89&year=2010&month=11&day=13&title=new-mexico-dystonia-sg-meeting&uid=1c17dd87c4a4650402d97bbb0b67cddd
48. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=43&Itemid=89&year=2010&month=11&day=13
49. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[3]enewsletter@dystonia-foundation.org
[4]Go the Dystance4Dystonia and run for those who can't!
[5]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[6]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[11]enewsletter@dystonia-foundation.org
[12]www.dystonia-foundation.org
© 2010 DMRF
September 2010 - to ensure delivery, please add
[13]enewsletter@dystonia-foundation.org to your address book.
September is a month when we all focus on education. With back to school
activities for many, education is never far from our minds. It is no different
at the DMRF, for we understand that staying on top of dystonia news and
information is very important. In addition to our website and our educational
materials, the DMRF hosts a number of events for our members.
Attend the Western Regional Dystonia Symposium
Join us for the Western Regional Symposium on October 2nd. This great event
will allow members of the dystonia community the opportunity to learn more
about the disorder, network, and share their experiences.
Hilton Pasadena
168 S. Los Robles Avenue
Pasadena, CA 91101
Reception and Dinner
There will be a special reception and welcome dinner at 6:30 p.m. on Friday,
October 1st, at the Hilton Pasadina Hotel. We are extremely fortunate to have
guitarist/musician and DMRF Awareness Ambassador BILLY McLAUGHLIN in
attendance. Not only will he share his story of living with dystonia, he will
also be performing!The cost to attend the reception and the dinner is $20.
Conference
The conference sessions will start on Saturday, October 2nd, this includes a
continental breakfast, lunch and all materials. The registration fee for the
sessions is $25 and is separate from the dinner and concert.
Advanced registration is required and you are responsible for making your own
hotel reservations.
For more detailed information, please [14]click here.
To register, call: 800-377-DYST (3978) or [15]click here.
Mid-Atlantic Regional Dystonia Conference
The Greater Washington DC Dystonia Support Group invites you to attend the
Mid-Atlantic Regional Conference on November 14, 9:00am-5:00pm.
Holy Cross Hospital
1500 Forest Glen Road
Silver Spring, MD
Join us for a special one day conference where some of the top experts in the
field will present the latest dystonia research, treatments and much more. We
are pleased to offer you this conference at no charge with lunch included.
Pre-registration is required!
For more information or to register please contact Elena at
[16]dystonia10@md.net or 703.521.7918.
Registration Deadline: November 7, 2010
Make A Difference in Dystonia Research
You can make a difference!
Please join us on Tuesday, October 5th, at 6pm central time for an informative
webinar to discuss the Dystonia International Patient Registry (DIPR), founded
by Tyler's Hope for A Dystonia Cure and supported by the Dystonia Medical
Research Foundation.
The goal of this registry is to develop a comprehensive list of all individuals
who carry any of the dystonia gene deletions, specifically the DYT1 gene
deletion and their family members worldwide. It is the first and only dystonia
registry to attempt to capture this information to assist researchers in
finding a cure to dystonia.
In this webinar, moderated by the DIPR's Medical Advisor Dr. Michael Okun, you
will learn more about patient registries and whey they are important, along
with more specific information about the DIPR registry and how you can help
make a difference in dystonia research.
To register for the webinar, please click on this link:
[17]https://www2.gotomeeting.com/register/131489003.
If you have questions about the webinar, please contact Jody Roosevelt at
[18]jroosevelt@dystonia-foundation.org.
DMRF Dogs4Dystonia Virtual Dog Walk
Join the DMRF for the 1st Annual DMRF Dogs4Dystonia Virtual Dog Walk.
Everyone who walks their dog can participate and raise much needed funds for
dystonia research!
How does it work? We are asking our dystonia family to walk their dogs during
the month of September and raise a minimum of $75 per dog in support of the
DMRF. Ask your family and friends to show their support by making a donation in
honor of your four legged friend.
All virtual Dogs4Dystonia participants will receive a "Thank You" package that
includes a Dogs4Dystonia bandana and ID tag for your dog.
The Virtual Walk is open for the entire month of September- any time, day or
night - you and your dog have the flexibility to walk when you want.The
Dogs4Dystonia Virtual Dog Walk is a great way to not only spend quality time
with your canine companion, it is also a great way to support a phenomenal
cause. Sign up to participate today!
To participate in the Dogs4Dystonia Virtual Dog Walk [19]click here.
Workplace Campaigns
The DMRF participates in the world's largest and most successful workplace
charity program, the Combined Federal Campaign (CFC). Through the CFC campaign,
government employees are able to make regular donations in support of the DMRF
through payroll deductions.
If you are a federal government or military employee and would like to support
the work of the DMRF, please take part in the Combined Federal Campaign by
entering the Foundations name and/or code #10592 on your pledge card.
Don't know if your agency is taking part in the CFC Program? Contact your Human
Resources Department to find out more.
Survey
Share Your Thoughts!
How was your last doctor’s visit? Are you looking for a way to share how your
visit went? Share your thoughts today.
Complete a short survey on dystonia, doctors, & care.
Click here: [20]https://www.surveymonkey.com/s/dystoniacare
Upcoming Events
09/01/10 [21]1st Annual DMRF Dogs4Dystonia Virtual Dog Walk
09/11/10 [22]Colorado-Denver SG Meeting
[23]New Mexico Dystonia SG Meeting
[24]Greater Dallas Dystonia/Dysphonia SG Meeting
09/12/10 [25]Central Connecticut Dystonia SG Meeting
09/19/10 [26]Greater Washington, DC SG Meeting
[27]RNR Philadelphia 1/2 Marathon
09/25/10 [28]San Diego County SG Meeting[29]
[30]Southeast, PA SG Meeting
09/26/10 [31]NJ Dogs4Dystonia Dog Walk (Freehold, NJ)
09/27/10 [32]RI Dystonia & Neurological Mov. Dis. SG Meeting
10/01/10 [33]Western Regional Symposium
10/02/10 [34]Quad-City Dystonia SG Meeting
10/03/10 [35]St. Louis Walkathon (St. Louis, MO)
[36]Medtronics Twin Cities Marathon (Minneapolis, MN)
10/04/10 [37]DC Golf and Tennis Classic
10/09/10 [38]Alabama Dystance4Dystonia Run
10/10/10 [39]Bank of America Chicago Marathon (Chicago, IL)
10/16/10 [40]Baltimore/John Hopkins SG Meeting
[41]PA Dogs4Dystonia (Kingston, PA)
10/24/10 [42]6th Annual Basket Bash (Chicago, IL)
10/28/10 [43]Annual NJ Tricky Tray (West Paterson, NJ)
10/30/10 [44]Tulsa Fun Run (Tulsa, OK)
11/13/10 [45]Dystance4Dystonia Walk (Santa Clarita, CA)
[46]North Bay CA SG Meeting
[47]New Mexico Dystonia SG Meeting
[48]Fairfield, CA Dystonia/ST SG Meeting
For information about these or other events, please
[49]enewsletter@dystonia-foundation.org.
References
1. http://www.dystonia-foundation.org/pages/merchandise/277.php
2. http://www.dystonia-foundation.org/pages/merchandise/277.php
3. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
4. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
5. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
6. http://dmrfenews.blogspot.com/
7. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
8. http://www.myspace.com/thedmrf
9. http://thedmrf.ning.com/
10. http://twitter.com/dmrf
11. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
12. http://www.dystonia-foundation.org/
13. mailto:enewsletter@dystonia-foundation.org
14. http://www.dystonia-foundation.org/pages/attend_the_western_regional_dystonia_symposium/571.php
15. http://www.dmrfevents.org/event.php?458954
16. mailto:dystonia10@md.net?subject=Mid-Atlantic%20Regional%20Conference
17. https://www2.gotomeeting.com/register/131489003
18. mailto:jroosevelt@dystonia-foundation.org?subject=DiPR%20info
19. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=77&Itemid=91
20. https://www.surveymonkey.com/s/dystoniacare
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=118&Itemid=89&year=2010&month=09&day=01&title=1st-annual-dmrf-dogs4dystonia-virtual-dog-walk&uid=7956e7bf99193997869465bfc7c7efb1
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=112&Itemid=89&year=2010&month=09&day=11&title=colorado-denver-sg-meeting&uid=6f58aff8f38eacb717ce522fbcffad2f
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=92&Itemid=89&year=2010&month=09&day=11&title=new-mexcio-dystonia-sg-meeting&uid=1dc93a986f03dd52178226e9ef01c8b3
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=116&Itemid=89&year=2010&month=09&day=11&title=greater-dallas-dystoniadysphonia-sg-meeting&uid=5a51751e9ccf9036816afa38985ac4f2
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=102&Itemid=89&year=2010&month=09&day=19&title=greater-washington-dc-dystonia-sg-meeting&uid=29371a002768eeff2e0c0cb5f001d311
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=117&Itemid=89&year=2010&month=09&day=25&title=san-diego-county-sg-meeting&uid=983b4a2df7ce0dfb528b842362db3dce
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=33&Itemid=89&year=2010&month=09&day=26&title=nj-dogs4dystonia-dog-walk&uid=668c6f6f98953f1092b05b40c2aa5728
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=113&Itemid=89&year=2010&month=09&day=27&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=6f40479909fa8d1356806d3e6f3df8d7
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=49&Itemid=89&year=2010&month=10&day=02&title=western-regional-symposium&uid=fb7ad822c07989ba1eff5450c196c422
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=110&Itemid=89&year=2010&month=10&day=02&title=quad-city-dystonia-sg-meeting&uid=bf7ac67bae5aacdda0be3213de5aec35
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=105&Itemid=89&year=2010&month=10&day=03&title=qmoving-forwardq-4th-annual-st-louis-dystonia-walk-a-thon&uid=30eebe76b967f20d87af2e9c7f46a6a9
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=96&Itemid=89&year=2010&month=10&day=03&title=medtronic-twin-cities-marathon&uid=379e1720caadc454d64d3c74ab90f3b1
37. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=107&Itemid=89&year=2010&month=10&day=04&title=dc-golf-and-tennis-classic&uid=84485cff044bd9977b0fc837a73114d0
38. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=103&Itemid=89&year=2010&month=10&day=09&title=alabama-dystance4dystonia-run&uid=870818d71aa02e48c4b5a91951829781
39. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=17&Itemid=89&year=2010&month=10&day=10&title=bank-of-america-chicago-marathon&uid=6ad1bf8969853341e2829586401ab13e
40. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=53&Itemid=89&year=2010&month=10&day=16&title=baltimorejohns-hopkins-support-group-meeting&uid=290d972c71314b4349d53fb5199f4f1b
41. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=104&Itemid=89&year=2010&month=10&day=16&title=pa-dogs4dystonia-walk-a-thon-kingston-pa&uid=99e167b0db48b840f1dc1197c772aec5
42. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=106&Itemid=89&year=2010&month=10&day=24&title=6th-annual-basket-bash&uid=4d6937907ed85f8ad771bd7da4c7af93
43. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=34&Itemid=89&year=2010&month=10&day=28&title=annual-new-jersey-tricky-tray&uid=a3ad21371ae59c55ecf0fcac8b64d758
44. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=82&Itemid=89&year=2010&month=10&day=30&title=tulsa-run&uid=51b4314392afb292ad1aad23de6f3b7a
45. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=115&Itemid=89&year=2010&month=11&day=13&title=santa-clarita-ca-dystance4dystonia-run&uid=e45d9f6bca62c8ad93e84c95d98dcea5
46. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=62&Itemid=89&year=2010&month=11&day=13&title=north-bay-ca-support-group-meeting&uid=8819bc40aa45873fad1b41cafe9db6bf
47. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=93&Itemid=89&year=2010&month=11&day=13&title=new-mexico-dystonia-sg-meeting&uid=1c17dd87c4a4650402d97bbb0b67cddd
48. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=43&Itemid=89&year=2010&month=11&day=13
49. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[3]enewsletter@dystonia-foundation.org
[4]Go the Dystance4Dystonia and run for those who can't!
[5]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[6]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[11]enewsletter@dystonia-foundation.org
[12]www.dystonia-foundation.org
© 2010 DMRF
Monday, August 23, 2010
DMRF eNews - August 2010
DMRF eNews
August 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.
On July, 13th the Dystonia Advocacy Network (DAN) unveiled its new website
[12]www.dystonia-advocacy.org. This site is designed to be the online home of
dystonia advocates across the country. The site provides comprehensive
information about our legislative agenda, the DAN member organizations, and how
to become a dystonia advocate. You'll also find tools for advocates, such as a
guide on how to call congressional offices or meet with elected officials. By
far the most innovative feature of the site is the “Legislative Alerts”
section. This allows any interested dystonia advocate to easily contact their
congressional offices and respond to “Action Alerts” with just a few clicks of
a mouse.
Dystonia Advocate Testifies before Senate Subcommittee
On June 23rd, the Senate Defense Appropriations Subcommittee held its first
hearing on the FY 2011 Defense Appropriations Bill. This legislation contains
the exclusive list of conditions eligible for study through the Department of
Defense (DOD) Peer-Reviewed Medical Research Program that dystonia was added to
in FY 2010. The Subcommittee requested that a handful of witnesses be present
to testify, including a dystonia representative. DMRF member and advocacy day
veteran Kathy Rentfrow appeared before the Subcommittee and presented her story
as a military spouse and the parent of a child with dystonia. She urged the
Subcommittee to keep dystonia on the eligible conditions list in FY 2011. Both
the Chairman of the Subcommittee, Senator Daniel Inouye (D-HI), and the Ranking
Member, Thad Cochran (R-MS), agreed to “seriously consider her request”.
You can view Kathy’s remarks at the link below (she is the 3rd speaker):
[13]http://appropriations.senate.gov/webcasts.cfm?method=webcasts.view&id=8951a
a36-cc0c-463e-8464-cb08b2e75c73
DMRF President Testifies Before the Food and Drug Administration
On June 29th, the Food and Drug Administration (FDA) held a hearing on rare
diseases and its processes for approving rare disease treatments. Art Kessler,
the Foundation’s President, appeared before the FDA panel and discussed
dystonia. Art’s presentation included before and after video clips of patients
who received botulinum toxin injections or deep brain stimulation (DBS). He
also spoke about his own personal story of the life-changing impact of DBS as
someone who has undergone procedure. Art informed the panel that their efforts
to expand access to treatments like DBS for rare disease populations were being
undermined because many insurers deny coverage for the procedure. Art called on
FDA to work with other government and private entities to address this barrier
to patient access in a timely and appropriate manner.
Three Dystonia Representative's Named to DOD's New Dystonia Panel
On June 9th, three members of the dystonia community Dee Linde (left), M.A.,
CPhT, Peter Cohen, Esq., and Aaron Lewis, M.D., were named to the DOD
Peer-Reviewed Medical Research Program’s new Dystonia Panel as Consumer
Reviewers. The appointment of these individuals follows the addition of
dystonia to the DOD programs FY 2010 list of conditions eligible for research
earlier this year. The fact that these individuals have been added to the panel
is a strong indication that the DOD is interested in actively pursuing research
in this area. The responsibility of these Consumer Reviewers will be to
compliment the perspective of the Scientific Reviewers on the panel by
evaluating dystonia research grant applications for the possible impact of the
proposed work as it relates to the potential for improved medical care and
enhanced quality of life. The DMRF was proud to nominate and work with these
outstanding candidates in preparing their applications for these appointments.
Want to become a dystonia advocate?
The DMRF relies on its grassroots network of advocates to educate Members of
Congress about dystonia, raise critical awareness, and secure support for
crucial legislative efforts which benefit dystonia patients. As a dystonia
advocate you can decide your own level of involvement. You can simply respond
to Action Alerts, or you can attend events like Advocacy Day in Washington, DC,
the choice is yours. If you are interested in becoming a dystonia advocate,
please contact the DMRF's Grassroots Coordinator, Dane Christiansen at
[14]dchristiansen@dystonia-foundation.org.
New Merchandise Item!
Proudly sport this DMRF cap, priced at only $15, and show your support while
raising awareness.
This cap is made of lightweight brushed cotton twill with a low profile soft
lining. It has a self fabric closure with ring buckle and pre-curved bill. It
is one size fits all and is perfect for everyday wear while you're out at a
ball game or just enjoying the sun.
[15]Click here to order your DMRF cap today!
Upcoming Events
8/01/10 [16]RNR Chicago 1/2 Marathon
8/14/10 [17]North Bay California SG Meeting
8/16/10 [18]2nd Annual Minnesota Dystonia Golf Classic
8/21/10 [19]Madison Mini-Marathon (Madison, WI)
8/28/10 [20]Fairfield, California SG Meeting
9/11/10 [21]New Mexico Dystonia SG Meeting
9/19/10 [22]Greater Washington, DC SG Meeting
[23]RNR Philadelphia 1/2 Marathon
9/25/10 [24]Southeast, PA SG Meeting
9/26/10 [25]NJ Dogs4Dystonia Dog Walk (Freehold, NJ)
10/02/10 [26]Western Regional Symposium
10/03/10 [27]St. Louis Walkathon (St. Louis, MO)
[28]Medtronics Twin Cities Marathon (Minneapolis, MN)
10/04/10 [29]DC Golf and Tennis Classic
10/09/10 [30]Alabama Dystance4Dystonia Run
10/10/10 [31]Bank of America Chicago Marathon (Chicago, IL)
10/16/10 [32]Baltimore/John Hopkins SG Meeting
[33]PA Dogs for Dystonia (Kingston, PA)
10/24/10 [34]6th Annual Basket Bash (Chicago, IL)
10/28/10 [35]Annual NJ Tricky Tray (West Paterson, NJ)
10/30/10 [36]Tulsa Fun Run (Tulsa, OK)
For information about these or other events, please
[37]enewsletter@dystonia-foundation.org.
References
1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
10. http://www.dystonia-foundation.org/
11. mailto:enewsletter@dystonia-foundation.org
12. http://www.dystonia-advocacy.org/
13. http://appropriations.senate.gov/webcasts.cfm?method=webcasts.view&id=8951aa36-cc0c-463e-8464-cb08b2e75c73
14. mailto:dchristiansen@dystonia-foundation.org.?subject=Interested%20in%20Advocacy
15. http://www.dystonia-foundation.org/pages/merchandise/277.php
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=61&Itemid=89&year=2010&month=08&day=14&title=north-bay-ca-support-group-meeting&uid=8304527f4eb40c265f056d44f8ae5814
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=21&Itemid=89&year=2010&month=08&day=16&title=2nd-annual-minnesota-dystonia-golf-classic&uid=ae832f5d9b92889ddcddd75e7350e8db
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=57&Itemid=89&year=2010&month=08&day=28&title=fairfield-ca-support-group-meeting&uid=c762c5b4dbb954e16ceb405a464c06bc
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=92&Itemid=89&year=2010&month=09&day=11&title=new-mexcio-dystonia-sg-meeting&uid=1dc93a986f03dd52178226e9ef01c8b3
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=102&Itemid=89&year=2010&month=09&day=19&title=greater-washington-dc-dystonia-sg-meeting&uid=29371a002768eeff2e0c0cb5f001d311
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=33&Itemid=89&year=2010&month=09&day=26&title=nj-dogs4dystonia-dog-walk&uid=668c6f6f98953f1092b05b40c2aa5728
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=49&Itemid=89&year=2010&month=10&day=02&title=western-regional-symposium&uid=fb7ad822c07989ba1eff5450c196c422
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=105&Itemid=89&year=2010&month=10&day=03&title=qmoving-forwardq-4th-annual-st-louis-dystonia-walk-a-thon&uid=30eebe76b967f20d87af2e9c7f46a6a9
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=96&Itemid=89&year=2010&month=10&day=03&title=medtronic-twin-cities-marathon&uid=379e1720caadc454d64d3c74ab90f3b1
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=107&Itemid=89&year=2010&month=10&day=04&title=dc-golf-and-tennis-classic&uid=84485cff044bd9977b0fc837a73114d0
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=103&Itemid=89&year=2010&month=10&day=09&title=alabama-dystance4dystonia-run&uid=870818d71aa02e48c4b5a91951829781
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=17&Itemid=89&year=2010&month=10&day=10&title=bank-of-america-chicago-marathon&uid=6ad1bf8969853341e2829586401ab13e
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=53&Itemid=89&year=2010&month=10&day=16&title=baltimorejohns-hopkins-support-group-meeting&uid=290d972c71314b4349d53fb5199f4f1b
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=104&Itemid=89&year=2010&month=10&day=16&title=pa-dogs4dystonia-walk-a-thon-kingston-pa&uid=99e167b0db48b840f1dc1197c772aec5
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=106&Itemid=89&year=2010&month=10&day=24&title=6th-annual-basket-bash&uid=4d6937907ed85f8ad771bd7da4c7af93
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=34&Itemid=89&year=2010&month=10&day=28&title=annual-new-jersey-tricky-tray&uid=a3ad21371ae59c55ecf0fcac8b64d758
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=82&Itemid=89&year=2010&month=10&day=30&title=tulsa-run&uid=51b4314392afb292ad1aad23de6f3b7a
37. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[9]enewsletter@dystonia-foundation.org
[10]www.dystonia-foundation.org
© 2010 DMRF
August 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.
On July, 13th the Dystonia Advocacy Network (DAN) unveiled its new website
[12]www.dystonia-advocacy.org. This site is designed to be the online home of
dystonia advocates across the country. The site provides comprehensive
information about our legislative agenda, the DAN member organizations, and how
to become a dystonia advocate. You'll also find tools for advocates, such as a
guide on how to call congressional offices or meet with elected officials. By
far the most innovative feature of the site is the “Legislative Alerts”
section. This allows any interested dystonia advocate to easily contact their
congressional offices and respond to “Action Alerts” with just a few clicks of
a mouse.
Dystonia Advocate Testifies before Senate Subcommittee
On June 23rd, the Senate Defense Appropriations Subcommittee held its first
hearing on the FY 2011 Defense Appropriations Bill. This legislation contains
the exclusive list of conditions eligible for study through the Department of
Defense (DOD) Peer-Reviewed Medical Research Program that dystonia was added to
in FY 2010. The Subcommittee requested that a handful of witnesses be present
to testify, including a dystonia representative. DMRF member and advocacy day
veteran Kathy Rentfrow appeared before the Subcommittee and presented her story
as a military spouse and the parent of a child with dystonia. She urged the
Subcommittee to keep dystonia on the eligible conditions list in FY 2011. Both
the Chairman of the Subcommittee, Senator Daniel Inouye (D-HI), and the Ranking
Member, Thad Cochran (R-MS), agreed to “seriously consider her request”.
You can view Kathy’s remarks at the link below (she is the 3rd speaker):
[13]http://appropriations.senate.gov/webcasts.cfm?method=webcasts.view&id=8951a
a36-cc0c-463e-8464-cb08b2e75c73
DMRF President Testifies Before the Food and Drug Administration
On June 29th, the Food and Drug Administration (FDA) held a hearing on rare
diseases and its processes for approving rare disease treatments. Art Kessler,
the Foundation’s President, appeared before the FDA panel and discussed
dystonia. Art’s presentation included before and after video clips of patients
who received botulinum toxin injections or deep brain stimulation (DBS). He
also spoke about his own personal story of the life-changing impact of DBS as
someone who has undergone procedure. Art informed the panel that their efforts
to expand access to treatments like DBS for rare disease populations were being
undermined because many insurers deny coverage for the procedure. Art called on
FDA to work with other government and private entities to address this barrier
to patient access in a timely and appropriate manner.
Three Dystonia Representative's Named to DOD's New Dystonia Panel
On June 9th, three members of the dystonia community Dee Linde (left), M.A.,
CPhT, Peter Cohen, Esq., and Aaron Lewis, M.D., were named to the DOD
Peer-Reviewed Medical Research Program’s new Dystonia Panel as Consumer
Reviewers. The appointment of these individuals follows the addition of
dystonia to the DOD programs FY 2010 list of conditions eligible for research
earlier this year. The fact that these individuals have been added to the panel
is a strong indication that the DOD is interested in actively pursuing research
in this area. The responsibility of these Consumer Reviewers will be to
compliment the perspective of the Scientific Reviewers on the panel by
evaluating dystonia research grant applications for the possible impact of the
proposed work as it relates to the potential for improved medical care and
enhanced quality of life. The DMRF was proud to nominate and work with these
outstanding candidates in preparing their applications for these appointments.
Want to become a dystonia advocate?
The DMRF relies on its grassroots network of advocates to educate Members of
Congress about dystonia, raise critical awareness, and secure support for
crucial legislative efforts which benefit dystonia patients. As a dystonia
advocate you can decide your own level of involvement. You can simply respond
to Action Alerts, or you can attend events like Advocacy Day in Washington, DC,
the choice is yours. If you are interested in becoming a dystonia advocate,
please contact the DMRF's Grassroots Coordinator, Dane Christiansen at
[14]dchristiansen@dystonia-foundation.org.
New Merchandise Item!
Proudly sport this DMRF cap, priced at only $15, and show your support while
raising awareness.
This cap is made of lightweight brushed cotton twill with a low profile soft
lining. It has a self fabric closure with ring buckle and pre-curved bill. It
is one size fits all and is perfect for everyday wear while you're out at a
ball game or just enjoying the sun.
[15]Click here to order your DMRF cap today!
Upcoming Events
8/01/10 [16]RNR Chicago 1/2 Marathon
8/14/10 [17]North Bay California SG Meeting
8/16/10 [18]2nd Annual Minnesota Dystonia Golf Classic
8/21/10 [19]Madison Mini-Marathon (Madison, WI)
8/28/10 [20]Fairfield, California SG Meeting
9/11/10 [21]New Mexico Dystonia SG Meeting
9/19/10 [22]Greater Washington, DC SG Meeting
[23]RNR Philadelphia 1/2 Marathon
9/25/10 [24]Southeast, PA SG Meeting
9/26/10 [25]NJ Dogs4Dystonia Dog Walk (Freehold, NJ)
10/02/10 [26]Western Regional Symposium
10/03/10 [27]St. Louis Walkathon (St. Louis, MO)
[28]Medtronics Twin Cities Marathon (Minneapolis, MN)
10/04/10 [29]DC Golf and Tennis Classic
10/09/10 [30]Alabama Dystance4Dystonia Run
10/10/10 [31]Bank of America Chicago Marathon (Chicago, IL)
10/16/10 [32]Baltimore/John Hopkins SG Meeting
[33]PA Dogs for Dystonia (Kingston, PA)
10/24/10 [34]6th Annual Basket Bash (Chicago, IL)
10/28/10 [35]Annual NJ Tricky Tray (West Paterson, NJ)
10/30/10 [36]Tulsa Fun Run (Tulsa, OK)
For information about these or other events, please
[37]enewsletter@dystonia-foundation.org.
References
1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
10. http://www.dystonia-foundation.org/
11. mailto:enewsletter@dystonia-foundation.org
12. http://www.dystonia-advocacy.org/
13. http://appropriations.senate.gov/webcasts.cfm?method=webcasts.view&id=8951aa36-cc0c-463e-8464-cb08b2e75c73
14. mailto:dchristiansen@dystonia-foundation.org.?subject=Interested%20in%20Advocacy
15. http://www.dystonia-foundation.org/pages/merchandise/277.php
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=61&Itemid=89&year=2010&month=08&day=14&title=north-bay-ca-support-group-meeting&uid=8304527f4eb40c265f056d44f8ae5814
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=21&Itemid=89&year=2010&month=08&day=16&title=2nd-annual-minnesota-dystonia-golf-classic&uid=ae832f5d9b92889ddcddd75e7350e8db
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=57&Itemid=89&year=2010&month=08&day=28&title=fairfield-ca-support-group-meeting&uid=c762c5b4dbb954e16ceb405a464c06bc
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=92&Itemid=89&year=2010&month=09&day=11&title=new-mexcio-dystonia-sg-meeting&uid=1dc93a986f03dd52178226e9ef01c8b3
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=102&Itemid=89&year=2010&month=09&day=19&title=greater-washington-dc-dystonia-sg-meeting&uid=29371a002768eeff2e0c0cb5f001d311
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=33&Itemid=89&year=2010&month=09&day=26&title=nj-dogs4dystonia-dog-walk&uid=668c6f6f98953f1092b05b40c2aa5728
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=49&Itemid=89&year=2010&month=10&day=02&title=western-regional-symposium&uid=fb7ad822c07989ba1eff5450c196c422
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=105&Itemid=89&year=2010&month=10&day=03&title=qmoving-forwardq-4th-annual-st-louis-dystonia-walk-a-thon&uid=30eebe76b967f20d87af2e9c7f46a6a9
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=96&Itemid=89&year=2010&month=10&day=03&title=medtronic-twin-cities-marathon&uid=379e1720caadc454d64d3c74ab90f3b1
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=107&Itemid=89&year=2010&month=10&day=04&title=dc-golf-and-tennis-classic&uid=84485cff044bd9977b0fc837a73114d0
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=103&Itemid=89&year=2010&month=10&day=09&title=alabama-dystance4dystonia-run&uid=870818d71aa02e48c4b5a91951829781
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=17&Itemid=89&year=2010&month=10&day=10&title=bank-of-america-chicago-marathon&uid=6ad1bf8969853341e2829586401ab13e
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=53&Itemid=89&year=2010&month=10&day=16&title=baltimorejohns-hopkins-support-group-meeting&uid=290d972c71314b4349d53fb5199f4f1b
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=104&Itemid=89&year=2010&month=10&day=16&title=pa-dogs4dystonia-walk-a-thon-kingston-pa&uid=99e167b0db48b840f1dc1197c772aec5
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=106&Itemid=89&year=2010&month=10&day=24&title=6th-annual-basket-bash&uid=4d6937907ed85f8ad771bd7da4c7af93
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=34&Itemid=89&year=2010&month=10&day=28&title=annual-new-jersey-tricky-tray&uid=a3ad21371ae59c55ecf0fcac8b64d758
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=82&Itemid=89&year=2010&month=10&day=30&title=tulsa-run&uid=51b4314392afb292ad1aad23de6f3b7a
37. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[9]enewsletter@dystonia-foundation.org
[10]www.dystonia-foundation.org
© 2010 DMRF
Monday, August 2, 2010
DMRF eNews - July 2010
DMRF eNews
July 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.
New Programs - Great ways to raise much needed funds for science!
The Foundation launched two new fundraising programs, Dogs4Dystonia and
Dystance4Dystonia. Join us as we come together in communities across the
country to raise awareness and much needed funds to support our quest for a
cure.
Dogs4Dystonia is a dog walk for everyone, whether you are a dog owner, a dog
lover, or someone who just wants to do something to support the work of the
DMRF in the dystonia community. Look for two upcoming walks in the Fall in New
Jersey and in Pennsylvania.
Don't see a walk scheduled for your neck of the woods? Contact Lissa at
[12]LSalvatierra@dystonia-foundation.org today to find out how you can host
your own Dogs4Dystonia Dog Walk!
____________________________________________________________
Are you ready to join the DMRF in going the Dystance4Dystonia? This is a great
program and another way to raise dystonia awareness and funding.
Those who take part in the Dystance4Dystonia program can participate in
marathons, 10K, 8K, and 5K runs and walks in several communities across the
country. Did you want to host your own Dystance4Dystonia event? Contact Lissa
at [13]LSalvatierra@dystonia-foundation.org, who can help you plan one for your
community.
Both programs offer family, friends, neighbors and colleagues the opportunity
to show their support for the dystonia community while helping to raise much
needed funds for our programming.
A Big THANK YOU!
Congratulations and thank you to our volunteers who have hosted a dog walk or
participated in area runs!
Omaha, NE Dog Walk
Reston, VA Dog Walk
Eugene, OR Marathon
Show your support!
Come out and cheer for members of the Dystance4Dystonia team during their
upcoming runs:
[14]Kara Wilke at the [15]RNR Chicago 1/2 Marathon
[16]Jessica & [17]Aaron Meyer at the [18]Madison Mini-Marathon
[19]Meredith Fain at the [20]RNR Philadelphia 1/2 Marathon
[21]Jen Cannon at the [22]Twin Cities Marathon
[23]Jennifer Molski at the [24]Bank of America Chicago Marathon
Events on the Move
Come out and join us for some of our upcoming events. You're sure to have a
good time in support of a great cause.
2nd Annual MN Dystonia Golf Classic - Join MN Coordinator, Wayne Erickson on
August 16th, during a fun day of golf, dinner and a concert. [25]Click here to
learn more and register!
5th Annual "Dogs for Dystonia... a dog walk and so much more" - Join Central
Jersey Dystonia Support and Action Group on Sunday, September 26th. Activities
include a dog walk, dog adoptions, dog and child photographs, games, contests,
vendors and prizes. Want to register? [26]Click here.
Moving Forward- 4th Annual St. Louis Dystonia Walk-A-Thon - Grab your sneakers
and your friends and join us on Sunday, October 3rd. 5K and 3K routes
available. If you would like to register for Moving Forward, [27]click here.
Dystonia Golf & Tennis Classic and Banquet - Mark your calendars to come out
and join Board member Donna Driscoll to enjoy a day of golf and tennis on
Monday, October 4th. More information coming soon!
Alabama Dystance4Dystonia Run -The Dothan Satellite Support Group of DSGA has
set Saturday, October 9th as the date for the 1st Alabama Dystance4Dystonia
Run. Runners and walkers are welcome for this 5K run or 1 mile fun run/walk.
Come out and help to make this inaugural event a great success! For more
information, email Lissa at [28]LSalvatierra@dystonia-foundation.org.
Dogs4Dystonia Dog Walk- Kingston, PA - Bring your family and your human and
four-legged friends for a fun event to Kirby Park on Saturday, October 16th.
Enjoy the walk, the great company and the knowledge that you are supporting a
great cause. [29]Register today and get those leashes ready!
New Jersey Tricky Tray - Join volunteer and past President Claire Centrella at
the Annual New Jersey Tricky Tray on Thursday, October 28th. Try your luck on
hundreds of prize baskets and join us for a sit down dinner.
* * * * * *
Thank you to our volunteers who have hosted other fun and unique events in
support of the DMRF!
Calvert Nathans Yard Sale
To learn more about how you can bring a Dogs4Dystonia Dog Walk to your
community or how you can go the Dystance4Dystonia, email Lissa at
[30]LSalvatierra@dystonia-foundation.org.
Upcoming Events
[31]
7/07/10 [32]Mount Sinai SG Meeting
7/10/10 [33]New Mexico SG Meeting
[34]Quad-Cities SG Meeting
7/17/10 [35]Baltimore/John Hopkins SG Meeting
[36]San Diego County SG Meeting
8/01/10 [37]RNR Chicago 1/2 Marathon
8/14/10 [38]North Bay California SG Meeting
8/16/10 [39]2nd Annual Minnesota Dystonia Golf Classic
8/21/10 [40]Madison Mini-Marathon
8/28/10 [41]Fairfield, California SG Meeting
9/11/10 [42]New Mexico Dystonia SG Meeting
9/19/10 [43]RNR Philadelphia 1/2 Marathon
9/25/10 [44]Southeast PA SG Meeting
9/26/10 [45]NJ Dogs4Dystonia Dog Walk
[46][47]
[48]
For information about these or other events, please email us at
[49]enewsletter@dystonia-foundation.org.
References
1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
10. http://www.dystonia-foundation.org/
11. mailto:enewsletter@dystonia-foundation.org
12. mailto:LSalvatierra@dystonia-foundation.org?subject=Dogs4Dystonia
13. mailto:LSalvatierra@dystonia-foundation.org?subject=Dystance4Dystonia
14. http://www.rsvpbook.com/event.php?428837
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
16. http://www.rsvpbook.com/event.php?483218
17. http://www.rsvpbook.com/event.php?410222
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
19. http://www.rsvpbook.com/event.php?466577
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
21. http://www.rsvpbook.com/event.php?419510
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=96&Itemid=89&year=2010&month=10&day=03&title=medtronic-twin-cities-marathon&uid=379e1720caadc454d64d3c74ab90f3b1
23. http://www.rsvpbook.com/event.php?429343
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=17&Itemid=89&year=2010&month=10&day=10&title=bank-of-america-chicago-marathon&uid=6ad1bf8969853341e2829586401ab13e
25. http://www.rsvpbook.com/event.php?401747
26. http://www.dogsfordystonia.com/shop/page/4?shop_param=
27. http://www.rsvpbook.com/event.php?463531
28. mailto:LSalvatierra@dystonia-foundation.org?subject=Alabama%20Dystance4Dystonia%20Run
29. http://www.rsvpbook.com/event.php?449855
30. mailto:LSalvatierra@dystonia-foundation.org?subject=Dogs4Dystonia%20or%20Dystance4Dystonia%20Information
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=59&Itemid=89&year=2010&month=07&day=07&title=mount-sinai-support-group-meeting&uid=8fc920c0cbef2ecf400de08a1b158f50
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=91&Itemid=89&year=2010&month=07&day=10&title=new-mexcio-dystonia-sg-meeting&uid=71b384d187fb426fe96fcae098b0578e
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=95&Itemid=89&year=2010&month=07&day=10&title=quad-cities-sg-meeting&uid=99f68a39f919185aee41ebd0c972f1af
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=52&Itemid=89&year=2010&month=07&day=17&title=baltimorejohn-hopkins-dystonia-support-group-meeting&uid=79252326e2f512127c522b24a989b9d1
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=94&Itemid=89&year=2010&month=07&day=17&title=san-diego-county-sg-meeting&uid=941355ea8444f6a09f3fd35474a179ff
37. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
38. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=61&Itemid=89&year=2010&month=08&day=14&title=north-bay-ca-support-group-meeting&uid=8304527f4eb40c265f056d44f8ae5814
39. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=21&Itemid=89&year=2010&month=08&day=16&title=2nd-annual-minnesota-dystonia-golf-classic&uid=ae832f5d9b92889ddcddd75e7350e8db
40. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
41. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=57&Itemid=89&year=2010&month=08&day=28&title=fairfield-ca-support-group-meeting&uid=c762c5b4dbb954e16ceb405a464c06bc
42. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=92&Itemid=89&year=2010&month=09&day=11&title=new-mexcio-dystonia-sg-meeting&uid=1dc93a986f03dd52178226e9ef01c8b3
43. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
44. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=57&Itemid=89&year=2010&month=09&day=25
45. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=31&Itemid=89&year=2010&month=09&day=26
46. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=75&Itemid=89&year=2010&month=06&day=08&title=dystonia-twitter-awareness-day&uid=fd6b30b7d21a4758d9516080fbcfb931
47. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=84&Itemid=89&year=2010&month=06&day=12&title=greater-dallas-dystoniadysphonia-sg-meeting&uid=15680f6fb82764c73a8fbc9424072e59
48. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
49. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
[5]
[6]
[7]
[8]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[9]enewsletter@dystonia-foundation.org
[10]www.dystonia-foundation.org
© 2010 DMRF
July 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.
New Programs - Great ways to raise much needed funds for science!
The Foundation launched two new fundraising programs, Dogs4Dystonia and
Dystance4Dystonia. Join us as we come together in communities across the
country to raise awareness and much needed funds to support our quest for a
cure.
Dogs4Dystonia is a dog walk for everyone, whether you are a dog owner, a dog
lover, or someone who just wants to do something to support the work of the
DMRF in the dystonia community. Look for two upcoming walks in the Fall in New
Jersey and in Pennsylvania.
Don't see a walk scheduled for your neck of the woods? Contact Lissa at
[12]LSalvatierra@dystonia-foundation.org today to find out how you can host
your own Dogs4Dystonia Dog Walk!
____________________________________________________________
Are you ready to join the DMRF in going the Dystance4Dystonia? This is a great
program and another way to raise dystonia awareness and funding.
Those who take part in the Dystance4Dystonia program can participate in
marathons, 10K, 8K, and 5K runs and walks in several communities across the
country. Did you want to host your own Dystance4Dystonia event? Contact Lissa
at [13]LSalvatierra@dystonia-foundation.org, who can help you plan one for your
community.
Both programs offer family, friends, neighbors and colleagues the opportunity
to show their support for the dystonia community while helping to raise much
needed funds for our programming.
A Big THANK YOU!
Congratulations and thank you to our volunteers who have hosted a dog walk or
participated in area runs!
Omaha, NE Dog Walk
Reston, VA Dog Walk
Eugene, OR Marathon
Show your support!
Come out and cheer for members of the Dystance4Dystonia team during their
upcoming runs:
[14]Kara Wilke at the [15]RNR Chicago 1/2 Marathon
[16]Jessica & [17]Aaron Meyer at the [18]Madison Mini-Marathon
[19]Meredith Fain at the [20]RNR Philadelphia 1/2 Marathon
[21]Jen Cannon at the [22]Twin Cities Marathon
[23]Jennifer Molski at the [24]Bank of America Chicago Marathon
Events on the Move
Come out and join us for some of our upcoming events. You're sure to have a
good time in support of a great cause.
2nd Annual MN Dystonia Golf Classic - Join MN Coordinator, Wayne Erickson on
August 16th, during a fun day of golf, dinner and a concert. [25]Click here to
learn more and register!
5th Annual "Dogs for Dystonia... a dog walk and so much more" - Join Central
Jersey Dystonia Support and Action Group on Sunday, September 26th. Activities
include a dog walk, dog adoptions, dog and child photographs, games, contests,
vendors and prizes. Want to register? [26]Click here.
Moving Forward- 4th Annual St. Louis Dystonia Walk-A-Thon - Grab your sneakers
and your friends and join us on Sunday, October 3rd. 5K and 3K routes
available. If you would like to register for Moving Forward, [27]click here.
Dystonia Golf & Tennis Classic and Banquet - Mark your calendars to come out
and join Board member Donna Driscoll to enjoy a day of golf and tennis on
Monday, October 4th. More information coming soon!
Alabama Dystance4Dystonia Run -The Dothan Satellite Support Group of DSGA has
set Saturday, October 9th as the date for the 1st Alabama Dystance4Dystonia
Run. Runners and walkers are welcome for this 5K run or 1 mile fun run/walk.
Come out and help to make this inaugural event a great success! For more
information, email Lissa at [28]LSalvatierra@dystonia-foundation.org.
Dogs4Dystonia Dog Walk- Kingston, PA - Bring your family and your human and
four-legged friends for a fun event to Kirby Park on Saturday, October 16th.
Enjoy the walk, the great company and the knowledge that you are supporting a
great cause. [29]Register today and get those leashes ready!
New Jersey Tricky Tray - Join volunteer and past President Claire Centrella at
the Annual New Jersey Tricky Tray on Thursday, October 28th. Try your luck on
hundreds of prize baskets and join us for a sit down dinner.
* * * * * *
Thank you to our volunteers who have hosted other fun and unique events in
support of the DMRF!
Calvert Nathans Yard Sale
To learn more about how you can bring a Dogs4Dystonia Dog Walk to your
community or how you can go the Dystance4Dystonia, email Lissa at
[30]LSalvatierra@dystonia-foundation.org.
Upcoming Events
[31]
7/07/10 [32]Mount Sinai SG Meeting
7/10/10 [33]New Mexico SG Meeting
[34]Quad-Cities SG Meeting
7/17/10 [35]Baltimore/John Hopkins SG Meeting
[36]San Diego County SG Meeting
8/01/10 [37]RNR Chicago 1/2 Marathon
8/14/10 [38]North Bay California SG Meeting
8/16/10 [39]2nd Annual Minnesota Dystonia Golf Classic
8/21/10 [40]Madison Mini-Marathon
8/28/10 [41]Fairfield, California SG Meeting
9/11/10 [42]New Mexico Dystonia SG Meeting
9/19/10 [43]RNR Philadelphia 1/2 Marathon
9/25/10 [44]Southeast PA SG Meeting
9/26/10 [45]NJ Dogs4Dystonia Dog Walk
[46][47]
[48]
For information about these or other events, please email us at
[49]enewsletter@dystonia-foundation.org.
References
1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
10. http://www.dystonia-foundation.org/
11. mailto:enewsletter@dystonia-foundation.org
12. mailto:LSalvatierra@dystonia-foundation.org?subject=Dogs4Dystonia
13. mailto:LSalvatierra@dystonia-foundation.org?subject=Dystance4Dystonia
14. http://www.rsvpbook.com/event.php?428837
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
16. http://www.rsvpbook.com/event.php?483218
17. http://www.rsvpbook.com/event.php?410222
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
19. http://www.rsvpbook.com/event.php?466577
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
21. http://www.rsvpbook.com/event.php?419510
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=96&Itemid=89&year=2010&month=10&day=03&title=medtronic-twin-cities-marathon&uid=379e1720caadc454d64d3c74ab90f3b1
23. http://www.rsvpbook.com/event.php?429343
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=17&Itemid=89&year=2010&month=10&day=10&title=bank-of-america-chicago-marathon&uid=6ad1bf8969853341e2829586401ab13e
25. http://www.rsvpbook.com/event.php?401747
26. http://www.dogsfordystonia.com/shop/page/4?shop_param=
27. http://www.rsvpbook.com/event.php?463531
28. mailto:LSalvatierra@dystonia-foundation.org?subject=Alabama%20Dystance4Dystonia%20Run
29. http://www.rsvpbook.com/event.php?449855
30. mailto:LSalvatierra@dystonia-foundation.org?subject=Dogs4Dystonia%20or%20Dystance4Dystonia%20Information
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=59&Itemid=89&year=2010&month=07&day=07&title=mount-sinai-support-group-meeting&uid=8fc920c0cbef2ecf400de08a1b158f50
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=91&Itemid=89&year=2010&month=07&day=10&title=new-mexcio-dystonia-sg-meeting&uid=71b384d187fb426fe96fcae098b0578e
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=95&Itemid=89&year=2010&month=07&day=10&title=quad-cities-sg-meeting&uid=99f68a39f919185aee41ebd0c972f1af
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=52&Itemid=89&year=2010&month=07&day=17&title=baltimorejohn-hopkins-dystonia-support-group-meeting&uid=79252326e2f512127c522b24a989b9d1
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=94&Itemid=89&year=2010&month=07&day=17&title=san-diego-county-sg-meeting&uid=941355ea8444f6a09f3fd35474a179ff
37. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
38. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=61&Itemid=89&year=2010&month=08&day=14&title=north-bay-ca-support-group-meeting&uid=8304527f4eb40c265f056d44f8ae5814
39. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=21&Itemid=89&year=2010&month=08&day=16&title=2nd-annual-minnesota-dystonia-golf-classic&uid=ae832f5d9b92889ddcddd75e7350e8db
40. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
41. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=57&Itemid=89&year=2010&month=08&day=28&title=fairfield-ca-support-group-meeting&uid=c762c5b4dbb954e16ceb405a464c06bc
42. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=92&Itemid=89&year=2010&month=09&day=11&title=new-mexcio-dystonia-sg-meeting&uid=1dc93a986f03dd52178226e9ef01c8b3
43. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
44. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=57&Itemid=89&year=2010&month=09&day=25
45. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=31&Itemid=89&year=2010&month=09&day=26
46. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=75&Itemid=89&year=2010&month=06&day=08&title=dystonia-twitter-awareness-day&uid=fd6b30b7d21a4758d9516080fbcfb931
47. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=84&Itemid=89&year=2010&month=06&day=12&title=greater-dallas-dystoniadysphonia-sg-meeting&uid=15680f6fb82764c73a8fbc9424072e59
48. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
49. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
[5]
[6]
[7]
[8]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[9]enewsletter@dystonia-foundation.org
[10]www.dystonia-foundation.org
© 2010 DMRF
Tuesday, June 29, 2010
DMRF eNews - June 2010
DMRF eNews
June 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.
Dystonia Awareness Week
June 6-12, 2010 is Dystonia Awareness Week. During this time, the DMRF
encourages members of the community to help educate the public about the
disorder. Consider some of the following ways to help raise awareness:
* Talk with one person a day about what dystonia is and how it impacts your
life
* Share information about dystonia with others by passing out trifold cards
(for information on how to get your trifold cards, email
[12]dystonia@dystonia-foundation.org)
* Participate in Dystonia Twitter Awareness Day on June 8th
Want to learn more about how dystonia impacts the lives of others? Stay tuned
for email profiles on individuals affected with dystonia presented throughout
awareness week. Forward them to your friends and family members.
Every effort makes a difference! Spread the word and raise awareness by sharing
with others information about dystonia.
Calling all Twitter Users - Dystonia Awareness Twitter Day
As part of Dystonia Awareness Week, Tuesday June 8th is Dystonia Twitter
Awareness Day, a time where Twitter users unite and talk about the impact of
dystonia on their lives. It's a great time to learn more about the disorder,
ask questions and get to know others who are affected.
The goal is for as many people as possible to tweet about dystonia and create a
trending topic. Last year's event generated a lot of interest and participation
online and we hope to build upon that success.
Get started now - sign up for a Twitter account at [13]htt://twitter.com.
Need more information on how to get started? [14]Click here for more
information.
Already have a Twitter account? Follow us at
[15]@dmrf today!
Looking for content to tweet about? Consider retweeting (or reposting) @dmrf.
DMRF Members Increasing Awareness and Making a Difference!
On Friday June 11, look for DMRF member Jason Dunn on a special episode of
"Extraordinary Humans: Muscles" on the National Geographic Channel. The episode
was partially filmed at the DMRF's 2009 John H. Menkes Children and Family
Symposium. Check local listings for air times. For a preview of the episode,
[16]click here.
What did you think about the episode? Tweet about it. Join @dmrf online on
Twitter and share your comments, thoughts and feelings.
Changing Keys, a film about guitarist and DMRF Awareness Ambassador Billy
McLaughlin, is scheduled to be broadcast on public television during the next
several months. Check your local listings to see if the film will be aired in
your area!
To identify your local public television affiliate, visit: http://www.pbs.org/.
If you do not see Changing Keys listed on the programming schedule, contact the
affiliate and make a request!
Watch for eNews alerts - we will share information about upcoming show times.
Upcoming Events
[17]
6/05/10 [18]Central Jersey SG Meeting
[19]Colorado SG Meeting
[20]Alley Run (Longview, TX)
6/06/10 [21]Dystonia Awareness Week Begins
[22]RNR San Diego Marathon & 1/2 Marathon
6/07/10 [23]Adult Dystonia SG Meeting (NY)
6/08/10 [24]Dystonia Twitter Awareness Day
6/12/10 [25]Greater Dallas Dystonia/Dysphonia SG Meeting
[26]Central Virginia Dysphonia/Dystonia SG Meeting
[27]Sherman Area SG Meeting
6/17/10 [28]New Jersey Dystonia Golf Invitational
6/19/10 [29]Southeast PA SG Meeting
6/29/10 [30]Central Oregon SG Meeting
7/07/10 [31]Mount Sinai SG Meeting
7/10/10 [32]New Mexico SG Meeting
7/17/10 [33]Baltimore/John Hopkins SG Meeting
8/01/10 [34]RNR Chicago 1/2 Marathon
8/14/10 [35]North Bay California SG Meeting
8/16/10 [36]2nd Annual Minnesota Dystonia Golf Classic
8/21/10 [37]Madison Mini-Marathon
8/28/10 [38]Fairfield, California SG Meeting
[39]
For information about these or other events, please email us at
[40]enewsletter@dystonia-foundation.org.
References
1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
10. http://www.dystonia-foundation.org/
11. mailto:enewsletter@dystonia-foundation.org
12. mailto:dystonia@dystonia-foundation.org?subject=I%27d%20like%20to%20order%20trifold%20cards
13. http://twitter.com/
14. http://www.dystonia-foundation.org/pages/create_a_trend/338.php
15. http://twitter.com/dmrf
16. http://channel.nationalgeographic.com/episode/muscles-4923/Overview#tab-Videos/08201_00
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=54&Itemid=89&year=2010&month=06&day=05&title=central-jersey-support-group-meeting&uid=3564426ec62cb9114e6540d31ad43492
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=88&Itemid=89&year=2010&month=06&day=05&title=dystonia-sg-of-colorado-meeting&uid=993d6d5a18bf4db53804a0a27335e981
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=78&Itemid=89&year=2010&month=06&day=05&title=alley-run&uid=45aa34315b242ebc7f8fef30e4229236
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=74&Itemid=89&year=2010&month=06&day=06&title=dystonia-awareness-week&uid=f047d81510cec092d70463189eab9041
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=85&Itemid=89&year=2010&month=06&day=06&title=rnr-san-diego-marathon-a-12-marathon&uid=98977199a5ce7cffc3eeb22ccc2011e9
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=68&Itemid=89&year=2010&month=06&day=07&title=adult-dystonia-sg-meeting&uid=2868abc2ddbbe18fdd1255e615bd3926
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=75&Itemid=89&year=2010&month=06&day=08&title=dystonia-twitter-awareness-day&uid=fd6b30b7d21a4758d9516080fbcfb931
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=84&Itemid=89&year=2010&month=06&day=12&title=greater-dallas-dystoniadysphonia-sg-meeting&uid=15680f6fb82764c73a8fbc9424072e59
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=89&Itemid=89&year=2010&month=06&day=12&title=the-sherman-area-dystonia-sg-meeting&uid=0687f70f231b3b2da3eea046bda02bfd
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=40&Itemid=89&year=2010&month=06&day=17&title=new-jersey-dystonia-golf-invitational&uid=1bf0fbc16aca53d2812d78ed5ab97962
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=63&Itemid=89&year=2010&month=06&day=19&title=southeast-pa-support-group-meeting&uid=89163b5675b96d7db2422e737a90c597
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=90&Itemid=89&year=2010&month=06&day=29&title=dystonia-sg-of-central-oregon-meeting&uid=48e845ca7447fc3cb77a5c4745caa7d2
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=59&Itemid=89&year=2010&month=07&day=07&title=mount-sinai-support-group-meeting&uid=8fc920c0cbef2ecf400de08a1b158f50
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=91&Itemid=89&year=2010&month=07&day=10&title=new-mexcio-dystonia-sg-meeting&uid=71b384d187fb426fe96fcae098b0578e
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=52&Itemid=89&year=2010&month=07&day=17&title=baltimorejohn-hopkins-dystonia-support-group-meeting&uid=79252326e2f512127c522b24a989b9d1
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=61&Itemid=89&year=2010&month=08&day=14&title=north-bay-ca-support-group-meeting&uid=8304527f4eb40c265f056d44f8ae5814
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=21&Itemid=89&year=2010&month=08&day=16&title=2nd-annual-minnesota-dystonia-golf-classic&uid=ae832f5d9b92889ddcddd75e7350e8db
37. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
38. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=57&Itemid=89&year=2010&month=08&day=28&title=fairfield-ca-support-group-meeting&uid=c762c5b4dbb954e16ceb405a464c06bc
39. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=3&Itemid=89&year=2010&month=04&day=24&title=calvertnathans-family-yard-sale-nj&uid=56df1b1f345151c8062576c91bdd6daa
40. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
[5]
[6]
[7]
[8]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[9]enewsletter@dystonia-foundation.org
[10]www.dystonia-foundation.org
© 2010 DMRF
June 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.
Dystonia Awareness Week
June 6-12, 2010 is Dystonia Awareness Week. During this time, the DMRF
encourages members of the community to help educate the public about the
disorder. Consider some of the following ways to help raise awareness:
* Talk with one person a day about what dystonia is and how it impacts your
life
* Share information about dystonia with others by passing out trifold cards
(for information on how to get your trifold cards, email
[12]dystonia@dystonia-foundation.org)
* Participate in Dystonia Twitter Awareness Day on June 8th
Want to learn more about how dystonia impacts the lives of others? Stay tuned
for email profiles on individuals affected with dystonia presented throughout
awareness week. Forward them to your friends and family members.
Every effort makes a difference! Spread the word and raise awareness by sharing
with others information about dystonia.
Calling all Twitter Users - Dystonia Awareness Twitter Day
As part of Dystonia Awareness Week, Tuesday June 8th is Dystonia Twitter
Awareness Day, a time where Twitter users unite and talk about the impact of
dystonia on their lives. It's a great time to learn more about the disorder,
ask questions and get to know others who are affected.
The goal is for as many people as possible to tweet about dystonia and create a
trending topic. Last year's event generated a lot of interest and participation
online and we hope to build upon that success.
Get started now - sign up for a Twitter account at [13]htt://twitter.com.
Need more information on how to get started? [14]Click here for more
information.
Already have a Twitter account? Follow us at
[15]@dmrf today!
Looking for content to tweet about? Consider retweeting (or reposting) @dmrf.
DMRF Members Increasing Awareness and Making a Difference!
On Friday June 11, look for DMRF member Jason Dunn on a special episode of
"Extraordinary Humans: Muscles" on the National Geographic Channel. The episode
was partially filmed at the DMRF's 2009 John H. Menkes Children and Family
Symposium. Check local listings for air times. For a preview of the episode,
[16]click here.
What did you think about the episode? Tweet about it. Join @dmrf online on
Twitter and share your comments, thoughts and feelings.
Changing Keys, a film about guitarist and DMRF Awareness Ambassador Billy
McLaughlin, is scheduled to be broadcast on public television during the next
several months. Check your local listings to see if the film will be aired in
your area!
To identify your local public television affiliate, visit: http://www.pbs.org/.
If you do not see Changing Keys listed on the programming schedule, contact the
affiliate and make a request!
Watch for eNews alerts - we will share information about upcoming show times.
Upcoming Events
[17]
6/05/10 [18]Central Jersey SG Meeting
[19]Colorado SG Meeting
[20]Alley Run (Longview, TX)
6/06/10 [21]Dystonia Awareness Week Begins
[22]RNR San Diego Marathon & 1/2 Marathon
6/07/10 [23]Adult Dystonia SG Meeting (NY)
6/08/10 [24]Dystonia Twitter Awareness Day
6/12/10 [25]Greater Dallas Dystonia/Dysphonia SG Meeting
[26]Central Virginia Dysphonia/Dystonia SG Meeting
[27]Sherman Area SG Meeting
6/17/10 [28]New Jersey Dystonia Golf Invitational
6/19/10 [29]Southeast PA SG Meeting
6/29/10 [30]Central Oregon SG Meeting
7/07/10 [31]Mount Sinai SG Meeting
7/10/10 [32]New Mexico SG Meeting
7/17/10 [33]Baltimore/John Hopkins SG Meeting
8/01/10 [34]RNR Chicago 1/2 Marathon
8/14/10 [35]North Bay California SG Meeting
8/16/10 [36]2nd Annual Minnesota Dystonia Golf Classic
8/21/10 [37]Madison Mini-Marathon
8/28/10 [38]Fairfield, California SG Meeting
[39]
For information about these or other events, please email us at
[40]enewsletter@dystonia-foundation.org.
References
1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
10. http://www.dystonia-foundation.org/
11. mailto:enewsletter@dystonia-foundation.org
12. mailto:dystonia@dystonia-foundation.org?subject=I%27d%20like%20to%20order%20trifold%20cards
13. http://twitter.com/
14. http://www.dystonia-foundation.org/pages/create_a_trend/338.php
15. http://twitter.com/dmrf
16. http://channel.nationalgeographic.com/episode/muscles-4923/Overview#tab-Videos/08201_00
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=54&Itemid=89&year=2010&month=06&day=05&title=central-jersey-support-group-meeting&uid=3564426ec62cb9114e6540d31ad43492
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=88&Itemid=89&year=2010&month=06&day=05&title=dystonia-sg-of-colorado-meeting&uid=993d6d5a18bf4db53804a0a27335e981
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=78&Itemid=89&year=2010&month=06&day=05&title=alley-run&uid=45aa34315b242ebc7f8fef30e4229236
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=74&Itemid=89&year=2010&month=06&day=06&title=dystonia-awareness-week&uid=f047d81510cec092d70463189eab9041
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=85&Itemid=89&year=2010&month=06&day=06&title=rnr-san-diego-marathon-a-12-marathon&uid=98977199a5ce7cffc3eeb22ccc2011e9
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=68&Itemid=89&year=2010&month=06&day=07&title=adult-dystonia-sg-meeting&uid=2868abc2ddbbe18fdd1255e615bd3926
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=75&Itemid=89&year=2010&month=06&day=08&title=dystonia-twitter-awareness-day&uid=fd6b30b7d21a4758d9516080fbcfb931
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=84&Itemid=89&year=2010&month=06&day=12&title=greater-dallas-dystoniadysphonia-sg-meeting&uid=15680f6fb82764c73a8fbc9424072e59
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=89&Itemid=89&year=2010&month=06&day=12&title=the-sherman-area-dystonia-sg-meeting&uid=0687f70f231b3b2da3eea046bda02bfd
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=40&Itemid=89&year=2010&month=06&day=17&title=new-jersey-dystonia-golf-invitational&uid=1bf0fbc16aca53d2812d78ed5ab97962
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=63&Itemid=89&year=2010&month=06&day=19&title=southeast-pa-support-group-meeting&uid=89163b5675b96d7db2422e737a90c597
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=90&Itemid=89&year=2010&month=06&day=29&title=dystonia-sg-of-central-oregon-meeting&uid=48e845ca7447fc3cb77a5c4745caa7d2
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=59&Itemid=89&year=2010&month=07&day=07&title=mount-sinai-support-group-meeting&uid=8fc920c0cbef2ecf400de08a1b158f50
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=91&Itemid=89&year=2010&month=07&day=10&title=new-mexcio-dystonia-sg-meeting&uid=71b384d187fb426fe96fcae098b0578e
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=52&Itemid=89&year=2010&month=07&day=17&title=baltimorejohn-hopkins-dystonia-support-group-meeting&uid=79252326e2f512127c522b24a989b9d1
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=61&Itemid=89&year=2010&month=08&day=14&title=north-bay-ca-support-group-meeting&uid=8304527f4eb40c265f056d44f8ae5814
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=21&Itemid=89&year=2010&month=08&day=16&title=2nd-annual-minnesota-dystonia-golf-classic&uid=ae832f5d9b92889ddcddd75e7350e8db
37. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
38. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=57&Itemid=89&year=2010&month=08&day=28&title=fairfield-ca-support-group-meeting&uid=c762c5b4dbb954e16ceb405a464c06bc
39. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=3&Itemid=89&year=2010&month=04&day=24&title=calvertnathans-family-yard-sale-nj&uid=56df1b1f345151c8062576c91bdd6daa
40. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
[5]
[6]
[7]
[8]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[9]enewsletter@dystonia-foundation.org
[10]www.dystonia-foundation.org
© 2010 DMRF
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