I've also included the below in the attached Word document for handout and
sharing.

WE MOVE is a not-for-profit organization that has been educating and informing
the movement disorder community for more then a decade. It believes that
increased knowledge and understanding promote timely, accurate diagnosis, and
up-to-date treatment, resulting in a better quality of life for individuals
affected by movement disorders.

WE MOVE has been an excellent resource for information on the movement disorder
symptoms of Huntington's Disease for both adults and children for many years
that I, personally, have referred to extensively over the years. We MOVE has a
new campaign, Life in Motion, that provides brochures in PDF format. Although
the overall Life in Motion brochure does not mention Huntington's Disease, it
does show the Huntington Study Group [H.S.G.] as on of the participating
organizations.

Fred Taubman - HDSA is not shown on the Life in Motion brochure however, under
WE MOVE's International Guide to Movement Disorder Patient Advocacy Groups and
Foundations [see below[ HDSA address information needs to be updated from HDSA's
old address.

For HD Chapters, Support Groups or Centers of Excellence who may want to order
these brochures, you can contact WE MOVE's Life in Motion at 866-546-3136 [toll
free], regular 212-875-8312

Jean

Life In Motion Brochure
PDF 2 page: http://www.life-in-motion.org/downloads/LIM_Brochure.pdf
Excerpts

WE MOVE recognizes that diagnosis and appropriate treatment remain challenges
for many people living with movement disorders. As part of this Life in Motion
campaign, WE MOVE brings together over 40 patient advocacy organizations,
foundations, and professional societies all committed to raising awareness about
these conditions, emphasizing the importance of early diagnosis, and
illustrating available treatment options.

The Life in Motion campaign provides patients, their families, and caregivers
with information, support, and practical tools they can use to more effectively
communicate with their healthcare team and take a more active role in managing
their own care to achieve their treatment goals.

Campaigns involved media outreach, public service announcements, community
outreach highlighting real stories of people living with movement disorders, and
the creation of the Life in Motion Resource Center to provide direct access to a
wealth of information and to the many patient and professional organizations
with information, support and other resources to share.

The links for HTML information also includes other resources like chats,
discussion forms , additional resources including national organizations, if
any.

Managing Your Life In Motion
A Guide for Patients with Movement Disorders, their Families and Caregivers
PDF 6 pages: http://www.life-in-motion.org/downloads/Life_in_Motion.pdf

Huntington's Disease
HTML: http://www.life-in-motion.org/disorders/hd.html
PDF: http://www.life-in-motion.org/downloads/factsheets/LIM_HD.pdf

Dystonia Fact Sheet [can be a symptom caused by HD]
HTML: http://www.life-in-motion.org/disorders/dystonia.html
PDF: http://www.life-in-motion.org/downloads/factsheets/LIM_dystonia.pdf
Dystonia is a movement disorder that causes your muscles to contract without
your control. This can cause twisting or jerking repetitive movements or
abnormal and uncomfortable positions or postures. Dystonia may affect any body
part, any area of the body, half of the body, or the entire body. In most people
with dystonia, the cause is not known.

Spasticity Fact Sheet [can be a symptom caused by HD]
HTML: http://www.life-in-motion.org/disorders/spasticity.html
PDF: http://www.life-in-motion.org/downloads/factsheets/LIM_spasticity.pdf
Unlike a normal muscle, when a spastic muscle is pulled or stretched it does not
lengthen. Instead, the muscle tightens or the muscle may not move at all. The
person with spasticity cannot control the tightening. The arm, leg, head or
body is then pulled out of normal position.

Tics and Tourette's Syndrome [can be a symptom caused by HD]
HTML: http://www.life-in-motion.org/disorders/tts.html
PDF: http://www.life-in-motion.org/downloads/factsheets/LIM_TicsTS.pdf
Tics are quick, sudden, senseless movements (motor tics) or sounds (vocal tics).
Tics are involuntary and cannot easily be controlled. Tics may be simple: Eye
blinking, Face grimacing, Shoulder shrugging, Head jerking, Throat clearing,
Grunting, Sniffing, Barking. Or more complex: Jumping. Hopping, Touching,
Squatting, Hand gestures, Repeating what someone else says, Repeating one's own
words, Involuntary use of foul language

OTHER MOVEMENT DISORDER BROCHURES

Parkinson's Disease
HTML: http://www.life-in-motion.org/disorders/pd.html
PDF: http://www.life-in-motion.org/downloads/factsheets/LIM_PD.pdf
Parkinson's disease (PD) is a movement disorder that causes tremor, slowed
movements, and stiffness, as well as many other symptoms. It is caused by loss
of cells in specific parts of the brain. Symptoms usually begin on one side of
the body. Tremor, or shaking, is often the first symptom of PD, and usually
begins in an arm or leg. Tremor is usually worse when the limb is at rest, and
lessens during movement. Slowed movements and stiffness are other early
symptoms.

Restless Legs Syndrome
HTML: http://www.life-in-motion.org/disorders/rls.html
PDF: http://www.life-in-motion.org/downloads/factsheets/LIM_RLS.pdf
Restless legs syndrome (RLS) is a movement and sleep disorder in which people
have odd feelings deep in their legs and a need to move their legs. RLS can feel
like pulling, burning, tingling, creepy-crawly, grabbing, buzzing, jitteriness,
or gnawing or even like ants crawling in the legs or Coca-Cola in the veins.
Some people call their symptoms the heebie-jeebies, fidgets, Elvis legs, crazy
legs or Jimmy legs. Most people with RLS have trouble falling asleep and staying
asleep.

Tremors
HTML: http://www.life-in-motion.org/disorders/tremor.html
PDF: http://www.life-in-motion.org/downloads/factsheets/LIM_tremor.pdf
Tremor is a rhythmic or regular back-and-forth movement (trembling or shaking)
of one or more parts of your body. People who have tremors cannot control the
movement. Tremors may begin at any age. In some people, tremor may come on
suddenly. In others, it may start slowly and get worse over many months or
years. Stress, nervousness, and illness make most tremors worse. Most tremors go
away during sleep.

OTHER WE MOVE RESOURCES

Movement Disorder Treatment and Rehabilitation Directory
http://www.wemove.org/TCD/adult.asp
WE MOVE provides an online Movement Disorder Treatment and Rehabilitation
Directory as a free service to the community. The Movement Disorder Treatment
and Rehabilitation Directory is designed to assist individuals in locating local
or regional physicians (e.g., academic institutions, treatment or rehabilitation
centers, and sole practitioners) who have a declared interest in the diagnosis,
treatment, and rehabilitation of people with a movement disorder.

Glossary of Terms Related to Movement Disorders
http://www.wemove.org/glossary/

International Guide to Movement Disorder Patient Advocacy Groups and Foundations
http://www.wemove.org/ASO/
PDF version 17 pages: http://www.life-in-motion.org/downloads/WE_MOVE_Guide.PDF
This presentation provides a comprehensive listing of non-profit organizations
around the world committed to facilitating accurate diagnosis and access to
up-to-date care. These organizations have established support services for
individuals with specific movement disorders and their families. Some have
chapter affiliates, publish educational materials, raise funds and provide grant
money for scientific research. Use the drop down menu to choose a movement
disorder.

To be listed:
Attention all Executive Directors/Medical Directors, if you would like to be
considered for possible inclusion in WE MOVE's International Guide to Movement
Disorder Patient Advocacy Groups and Foundations, kindly complete the form on
this link: http://www.wemove.org/ASO/edit/default.asp

Subscribe to WE MOVE News
http://www.wemove.org/stayconnected/
WE MOVE News-Stay Connected...Stay Informed-is a free electronic news service
that delivers brief, timely, understandable, cutting-edge information via e-mail
to lay audiences. It contains information about the diagnosis and treatment of
dystonia, essential tremor, Parkinson's disease, and other movement disorders.
This e-newsletter seeks to abolish the barriers to understandability of complex
medical information and increase communication among people affected by movement
disorders




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