Tuesday, March 1, 2011

Call on Congress to Advocate for Parkinson's Disease

 Take a few minutes to support PD
It isn't often that we have an opportunity to do something important to help the Parkinson's disease cause. We know that people want to contribute.  Now there is an opportunity for you, your friends and family to add your voice in grassroots support of to Call on Congress.

On Wednesday, March 2, 2011 a few hundred advocates will be personally meeting with Senators and Members of House of Representatives to ask that they join the Congressional Caucus on Parkinson's disease, to Co-sponsor the National Neurological Diseases Surveilance System Act and to support biomedical research as well as therapy development at the National Institutes of Health. 

While Parkinson's disease may discriminate about whom to attack, PD knows no political party boundaries. Call on Congress is more than a way to add your voice to the rest of the Parkinson's disease community while approximately 250 PD advocates have personal meetings with members of Congress and their staff members to advocate for awareness of the disease and the significant issues about PD. Call on Congress lets your legislators know that there are many PD constituents out there.

All it takes is a simple statement to your Congressman/woman begins with a single phone call or email in support of the passage of the revised National MS and Parkinnson's Disease Registries Act  (HR 1362 and S 1273) now known as the National Neurological Diseases Surveillance System Act of 2011-2012 S.425.  It will be introduced by Co-sponsor Senator Mark Udall, son of the late Morris Udall.  As a matter of fact, PAN has already written the statement which you can edit to personalize or send as is.

USA coast to coast
One purpose of the bill is establish a national data surveillance system which can track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including Parkinson’s and MS. A primary goal is to be able to collect information from many sources in order to measure the incidence and prevalence of the disease. The implications of having accurate data and geographical information open doors to problem solving.

This afternoon we "attended" the Parkinson's Action Network webcast, Research Public Policy Forum. where the importance of Your/Our PD stories carries great weight not only with legislators but also the public. For the last several years we have begun to see the humanizing of a disease which for so many years was seen as a stereotype. We share our patient and caregiver back-stories with each other and now it is time to share a few lines with people who have the power to represent us.

Please remember to thank your legislator if you see your State represented.

Update:  As you know, the National Neurological Diseases Surveilance System Act of 2011-2012 S.425.IS was introduced by Senator Udall.  That does not mean it is a done deal. Continued public support is necessary. Follow the bill so that you can send the necessary reminders to your government officials.

"The bill will create, for the first time, separate, permanent, and coordinated MS and Parkinson's disease national registries at the Centers for Disease Control and Prevention (CDC).  The registries will rely upon existing databases including Medicare, Veterans Affairs, state registries, and other databases to determine the incidence and prevalence of MS and Parkinson's disease across America."

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