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
Tuesday, November 9, 2010
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
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