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The HDSA new monthly newsletter is also requesting all HD families register for the 1st ever Movement Disorder summit 9-14! This is a unique way to raise awareness about movement disorders, like HD, while helping HDSA to gain recognition in Washington. Please check off the Huntington’s Disease Society of America (HDSA) when asked what organization you are supporting. HDSA will be awarded funds from the Life in Motion campaign based on the number of HDSA advocate letters sent through the link above.
Life in Motion has asked that only one letter per person be sent on behalf of HDSA and Life in Motion. Please take a few minutes now to help raise awareness of movement disorders like HD by visiting www.life-in-motion.org.
It’s simple and easy to do.....and don't forget to ask your friends and families to register too!
----- Original Message -----
From: Jean E. Miller
Sent: Monday, August 07, 2006 6:17 AM
Subject: Advocate Sept.14th 1st ever Movement Disorders Patient Summit Washington DC
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.
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.
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
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
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This letter has been sent on behalf of Jean E Miller and WE MOVE's Life in Motion Campaign.
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