Today, more than 82 million people in the United States live their lives challenged by a movement disorder. Countless among them do not even know that their shaking hands, their twisting legs, or their odd sensations have a name. Without a name, there is no diagnosis, no treatment, and no hope.
 
We need your help to remove the roadblock of namelessness and the isolation felt by many who think that they are alone in their struggles. Through a nationwide media campaign highlighting real people’s stories, WE MOVE will give a voice to movement disorders by illustrating the obstacles that people with a movement disorder face in their daily lives--stories written in people’s own words.
 
Will you please share with us the difficulties that you have overcome and the triumphs that you have achieved, as well as the obstacles that you continue to face as a result of your movement disorder? Your story may reach someone who is living with the same disorder that you have--someone who does not know that their symptoms have a name.
 
1.      With what condition are you or is your child living?
2.      How long did it take from the time you first noticed symptoms until you or your child went to the doctor?
3.      How long did it take to find a doctor to correctly diagnose the condition?
4.      How many doctors did you go to before you went to a doctor who correctly diagnosed the condition?
5.      What type of doctor diagnosed the condition? If you are willing to do so, please share with us the doctor’s name and the city and state in which he or she practices.
6.      Please tell us what it meant to you to have an accurate diagnosis for your or your child’s condition.
7.      What is your or your child’s current treatment, including prescription drugs, vitamins and supplements, and over-the-counter drugs, as well as physical or occupational therapy, injection therapy, surgery, chiropractic therapy, acupuncture, or other treatments?
8.      Has the treatment changed since the condition was first treated?
9.      Please share with us some specific examples of activities that you or your child could not do before you received a correct diagnosis for the condition. How has this changed since the condition was diagnosed and treated?
10.  Sometimes, a movement disorder affects people in ways that are not visible to other people. How has your or your child’s movement disorder affected you in ways that cannot be seen?
 
Please respond to these questions and give a voice to movement disorders by sending a message to us at wemove@wemove.org or clicking on this link.
 
In addition to wanting to hear your story, we are also looking for people living with a movement disorder or their parents who would be interested in becoming a spokesperson and sharing their personal story with newspaper, magazine, television, or radio audiences. If you are interested in receiving further information about being a spokesperson, please contact us by clicking on this link.
 

Your voice may reach someone who continues to live without hope.