See below....once you register a letter will automatically be sent to your state
reps on your behalf. Hopefully this can be linked to HDSA website!

Movement Disorders Patient Summit
September 14-15th, 2006 Washington, D.C.
WeMOVE: http://www.life-in-motion.org/lwc/

To commemorate Movement Disorders Awareness Month this October, the Life in
Motion campaign is sponsoring the first-ever Movement Disorders Patient Summit
in Washington, D.C. on September 14th and 15th. The purpose is to help raise
awareness about movement disorders among members of Congress and the media.
Representatives from the Life in Motion Coalition, as well as patients,
advocates, physicians and other healthcare professionals will be attending the
Summit to learn about the latest advancements in treatment options, diagnosis
and other quality of life challenges and coping strategies. Congressman Danny
Davis (D-IL) will be the keynote speaker at the Patient Summit. He worked with
the Life in Motion campaign in 2005 and was instrumental in passing a
Congressional resolution that declared October to be Movement Disorders
Awareness Month.
You are invited to attend the Patient Summit in September. More information will
be posted on this Web site in the coming weeks.

Letter Writing Campaign
To broaden awareness among Congressional representatives and increase media
interest, Life in Motion is initiating a letter-writing campaign targeted to
Congressional representatives. Patients and caregivers/family members can go to
the Life in Motion web site and access a letter that will be sent to their local
U.S. Congressmen. These letters will contain their name, city, and state of
residence. The letter highlights the need to raise awareness of movement
disorders and will urge their support of the Patient Summit.

The more letters that go out to Congress, the greater support we will have for
the Patient Summit, the more we will be able to raise awareness about movement
disorders and set the stage for improved patient care and quality of life in
years to come.

Thank you for your support.

Life in Motion Letter Writing Campaign
http://www.life-in-motion.org/lwc/lwc.asp

When you go to the above link you can select your Favorite Patient Advocacy
Group. Listed HD choices are the Huntington's Disease Society of America and
the Huntington Study Group

Once you register the following letter is AUTOMATICALLY sent to your state and
local representatives on your behalf by WE MOVE's Life in Motion Campaign

Re: Why Are 40 Million Americans Falling Through the Cracks?
Movement Disorders Patient Summit in Washington, DC on September 14, 2006

Dear Representative and Senators,

As a constituent and a person affected by a neurologic movement disorder, I
write to ask for a show of your support on September 14th at a Movement
Disorders Patient Summit to be held in Washington DC. More than 40 million
people - nearly one in seven Americans - are living with a movement disorder.
Comprising more than 30 neurological conditions, movement disorders can strike
anyone at any age and without any warning. These conditions include the more
commonly known Parkinson's disease, tics and Tourette's syndrome and tremor, to
the more unfamiliar such as dystonia, spasticity, Huntington's disease, and
ataxia. What all these patients have in common is the challenge of obtaining a
diagnosis and receiving up-to-date care.

To raise awareness of these disorders, WE MOVE, a not-for-profit organization
dedicated to providing education and awareness about movement disorders, formed
the Life in Motion Coalition. The Coalition's membership includes more than 50
national patient advocacy organizations, foundations and professional
organizations. This Fall, WE MOVE and the Life in Motion Coalition are
sponsoring the first-ever movement disorders national awareness event in
Washington DC. I encourage you to attend!!

Movement Disorder Patient Summit
September 14, 2006
Washington, DC


Movement disorders are chronic, often painful and debilitating conditions that
can completely destroy a person's quality of life. Although the science and
treatment for these disorders have advanced, patients remained
isolated-untreated, undertreated, or not treated at all. It is difficult to
imagine how many members of your own constituency remain in pain, not reaping
the benefits of emerging therapies. Lack of benefit is directly related to the
lack of awareness and understanding of these conditions. Statistics demonstrate
that people with movement disorders often visit more than 15 doctors over the
course of five years before receiving a correct diagnosis. Imagine, five years
of fear, isolation and embarrassment - with no idea what to do.

Your presence at the Movement Disorders Patient Summit will encourage interest
both from the press and the public and help to improve quality of life for 40
million Americans!

Thank you in advance for considering this request. Additional details will be
sent to your office as September 14th approaches. AN HOUR OF YOUR TIME CAN MEAN
SO MUCH--- TO SO MANY.
Sincerely,

Jean E Miller
address

This letter has been sent on behalf of Jean E Miller and WE MOVE's Life in
Motion Campaign.

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