DMRF eNews - May 2009

DMRF eNews

May 2009

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In the news...

...and the awareness keeps on growing!

Did you have chance to watch the dystonia segment on the talk show The
Doctors? We would like to thank Alex for her candidness about her
experiences with dystonia as well as Dr. Mark Lew for all of his efforts in
the dystonia community.

Would you like to share your thoughts?

Visit [http://thedmrf.ning.com] http://thedmrf.ning.com.

Botulinum Toxin A Dysport® approved

As reported by
[http://www.reuters.com/article/euRegulatoryNews/idUSBNG40742820090430]
Reuters on April 30th, Medicis Pharmaceutical and Ispen stated that US
health regulators approved Dysport for cervical dystonia and as an
anti-wrinkle treatment.

[http://www.reuters.com/article/euRegulatoryNews/idUSBNG40742820090430]
Click here to read more.

New research announced

The DMRF is pleased to announce the research initiatives being funded in
2009. Summaries for each study will be available later in the year.

[http://www.dystonia-foundation.org/pages/research_in_2009/148.php] Click
here to see which projects received funding

DMRF's Medical and Scientific Director, Mahlon DeLong, MD honored

In April, Emory University hosted a tribute to Mahlon DeLong, MD –
DMRF’s Scientific and Medical Director. The DeLong Celebration included
a day-long program: Basal Ganglia: Function, Movement Disorders and
Treatment Options, a symposium honoring the contributions of Mahlon DeLong,
MD;a celebration dinner honoring Dr. DeLong and presentations of the Courage
to Inspire Awards this year awarded to Muhammad and Lonnie Ali and Dr.
DeLong. The final component of this celebration was a public educational
program sponsored by Emory and the Dana Alliance for Brain Initiatives,
“Staying Sharp”.

It was a wonderful series of events to honor the many contributions of this
extraordinary man. Dr.DeLong’s research in the 1970’s, his
out-of-the-box thinking about the role of the basal ganglia has allowed for
the development of successful surgical treatments available to dystonia
patients today. The DMRF is so fortunate to have the benefit of Dr.
DeLong’s leadership, dedication and commitment. We congratulate him on his
many contributions and thank him for everything he has done to advance the
field.

Just diagnosed - now what?

After diagnosis, there are so many questions. What is dystonia? What
does my diagnosis mean? How does it impact me? What do I do next?

If you have these and other questions, we have a good place for you to
start getting answers and solve the puzzle.

[http://www.dystonia-foundation.org/filebin/Mo%20pdfs/SWF%20DystoniaPuzzles01.swf]
Click here to learn more.

FDA Safety label changes

On April 30, 2009, "the US Food and Drug Administration announced safety
label changes, including a boxed warning, and a Risk Evaluation and
Mitigation Strategy (REMS), are necessary for all botulinum toxin products"

Read more from the press release
[http://www.fda.gov/bbs/topics/NEWS/2009/NEW02005.html] here.

Billy McLaughlin appointed as DMRF Ambassador

The Foundation is proud to announce the appointment of musician and
person extraordinaire, Billy McLaughlin to the position of DMRF
Ambassador.Billy knows all to well what it means to struggle with dystonia
and how it feels to think that you are alone in this battle. Remarkably,
Billy has learned how to continue his musical career and agreed to share
his story in the new documentary film,
[http://www.youtube.com/user/cemiwire] “Changing Keys: Billy McLaughlin
and the Mysteries of Dystonia”, that made its world premiere in
Minneapolis last month.

Personal testimonies

Personal testimonies are the most effective way to raise dystonia awareness
and we are grateful to all of you who have shared your personal story so
that others can better understand what dystonia is and how it changes the
lives of those affected. Every time you talk about your dystonia – you are
helping someone to know about dystonia.

The DMRF wants to hear from you! We want to know your story and ask that
you consider sharing it with us.

Email [mailto:enewsletter@dystonia-foundation.org?subject=My%20story]
enewsletter@dystonia-foundation.org with how dystonia has impacted your
life or the life of a loved one.

DMRF Support Groups and more

Support groups offer a unique opportunity for people to come together to
share with one another, exchange information, raise awareness and advocate
within their respective communities.

Take for example the following groups.

The Fairfield Dystonia Support Group will meet on Saturday, 5/2 from
2-4:30 p.m. at Leader Carol Flynn's home in Fairfield, CA. Those with any
form of dystonia, along with your family members and friends, are invited
to attend. Come and share your story, learn from others, offer support and
receive support, and realize that you are not alone! The support group is
slowly growing and it is really helpful to meet and share with other people
who face similar daily challenges. Come join us!

For directions to the meeting, please contact Carol at caflynns@gmail.com
or 707-429-9668.

***

The Lincoln NE Dystonis Support Group is "Giving Back To Their Community"
on May 2nd as they work at the annual pasta-thon feed in Lincoln, NE. This
will be their 12th year volunteering to help serve approximately 7,000
marathon runners and their families the evening prior to the Lincoln
Marathon Race. They proudly hang their dystonia banner and answer any
questions the athletes ask.


A member of that group, Carmelita de la Guardia, continues on in the
group's tradition of raising awareness. Recently, Carmelita hosted a
cocktail party designed to raise awareness for dystonia. Among the 30
people in attendance was guest speaker, Hal Daub, who is a mayoral
candidate for the City of Omaha and who has agreed help raise awareness for
dystonia within the community.

***

The Dystonia Support & Advocacy Group of San Diego County invites you to
attend a special meeting on Saturday, 5/16 from 1-3:00 p.m. at Alvarado
Hospital, 6655 Alvarado Rd., San Diego, CA 92120. DR. VALENCIA PORTER from
the CHOPRA CENTER FOR WELL BEING in Carlsbad, CA www.chopra.com will be the
guest presenter. She will be discussing “Effective Strategies to Achieve
Mind/Body Health & Healing.” RSVP’s are appreciated to Martha Murphy,
Leader at [mailto:tmmurphy@juno.com?subject=May%2016th%20Meeting]
tmmurphy@juno.com or 619-582-1961.

***

The Los Angeles Dystonia Support Group is undergoing a leadership change.
Group founder and leader, Martin Beck, recently resigned due to
other commitments and we appreciate his years of service and wish him well.
Barbara Ellis has generously agreed to take over the leadership
role beginning with the next meeting that is scheduled for Sunday, June 7^th
from 1-3:00 p.m. at USC University Hospital, in the Copper Room on the 1^st
Floor, 1500 San Pablo St., Los Angeles, CA 90033. For more information or to
reach Barbara Ellis, e-mail her at
[mailto:LADystoSupport@aol.com?subject=Meeting%20information]
LADystoSupport@aol.com or phone714-841-9606 (please leave messages).

These are just a few examples of DMRFs support groups and volunteers at
work. We invite you find one in your area. To find a support group near
you,
[http://www.dystonia-foundation.org/pages/find_a_support_group/233.php]
click here.

Turn Over A Leaf was a SUCCESS!

Thank you to those who participated in the Macy's Turn Over A Leaf
shopping pass event. This year was the 2nd time DMRF joined forces with
Macy's and because of your support, we have raised twice as much money this
time around.

Paying tribute...

All of us are inspired especially by those who have touched our hearts in
ways we can never forget. At times, a simple thank you is not enough and
you find yourself wanting to do more. The DMRF can help you in your
efforts to pay tribute to that special someone. Whether it be online or a
letter writing campaign, we are here to help.

[http://www.rsvpbook.com/event.php?486930] Click here to see an example
what your tribute campaign could look like.

For more information on setting up a tribute campaign, please email
[mailto:enewsletter@dystonia-foundation.or?subject=Tribute%20campaign]
enewsletter@dystonia-foundation.org.

Mark your calendars

May 2, 2009 - Freedom Ride for Dystonia (DC)

- [http://www.rsvpbook.com/event.php?484755]
http://www.rsvpbook.com/event.php?484755

May 2, 2009 - Fairfield Dystonia Support Group Meeting (CA) - Email Carol
at [mailto:caflynns@gmail.com?subject=I%27d%20like%20more%20information]
caflynns@gmail.com for more information.

May 5th & 6th, 2009 - Advocacy Day (DC)

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

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

May 16, 2009 - Dystonia Support & Advocacy Group of San Diego County (CA)
- Alvarado Hospital

Email Martha Murphy at
[mailto:tmmurphy@juno.com?subject=I%27d%20like%20more%20information]
tmmurphy@juno.com for more information.

May 24, 2009 - Moving Forward - 3rd Annual St. Louis Dystonia Walkathon
(MO) - Creve Coeur Park

[http://www.rsvpbook.com/event.php?422174]
http://www.rsvpbook.com/event.php?422174

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

June 7, 2009 - Los Angeles Dystonia Support Group (CA) - USC University
Hospital

Email Barbara Ellis at
[mailto:LADystoSupport@aol.com?subject=I%27d%20like%20more%20information]
LADystoSupport@aol.com for more information.

August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club

[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524

Dystonia Awareness Week

June 1 - June 7

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© 2009 DMRF